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Tóm tắt nội dung (trích từ tài liệu gốc): J Neuropathol Exp Neurol Downloaded from https://academic.oup.com/jnen/article/77/12/1101/5144759 by guest on 02 August 2021 Vol. 77, No. 12, December 2018, pp. 1101�1114 doi: 10.1093/jnen/nly095 ORIGINAL ARTICLE Loss of Sarcomeric Scaffolding as a Common Baseline Histopathologic Lesion in Titin-Related Myopathies Rainiero A vila-Polo, MD, Edoardo Malfatti, MD, PhD, Xavie`re Lornage, MSc, Chrystel Cheraud, MD, Isabelle Nelson, PhD, Juliette Nectoux, PharmD, PhD, Johann Bo�hm, PhD, Raphael Schneider, MSc, Carola Hedberg-Oldfors, PhD, Bruno Eymard, MD, PhD, Soledad Monges, MD, Fabiana Lubienieck

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J Neuropathol Exp Neurol                                                                                                                                 Downloaded from https://academic.oup.com/jnen/article/77/12/1101/5144759 by guest on 02 August 2021

Vol. 77, No. 12, December 2018, pp. 1101�1114

doi: 10.1093/jnen/nly095



                                            ORIGINAL ARTICLE



     Loss of Sarcomeric Scaffolding as a Common Baseline

       Histopathologic Lesion in Titin-Related Myopathies



 Rainiero A vila-Polo, MD, Edoardo Malfatti, MD, PhD, Xavie`re Lornage, MSc, Chrystel Cheraud, MD,

  Isabelle Nelson, PhD, Juliette Nectoux, PharmD, PhD, Johann Bo�hm, PhD, Raphael Schneider, MSc,



              Carola Hedberg-Oldfors, PhD, Bruno Eymard, MD, PhD, Soledad Monges, MD,

      Fabiana Lubieniecki, MD, Guy Brochier, PhD, Mai Thao Bui, BSc, Angeline Madelaine, BSc,

       Clemence Labasse, BSc, Maud Beuvin, MSc, Emmanuelle Lace`ne, MSc, Anne Boland, PhD,



                  Jean-Franc�ois Deleuze, PhD, Julie Thompson, PhD, Isabelle Richard, PhD,

   Ana Lia Taratuto, MD, PhD, Bjarne Udd, MD, PhD, France Leturcq, PharmD, Gise`le Bonne, PhD,



         Anders Oldfors, MD, PhD, Jocelyn Laporte, PhD, and Norma Beatriz Romero, MD, PhD



From the Neuromuscular Morphology Unit, Myology Institute, GHU Pitie-           Abstract

    Salp^etrie`re, Paris, France (RA -P, EM, GB, MTB, AM, CL, MB, EL,

    NBR); FISEVI-UGC Anatomia Patologica-HU Virgen del Rocio, Se-                  Titin-related myopathies are heterogeneous clinical conditions as-

    villa, Spain (RA -P); University of Granada, Granada, Spain (RA -P); Sor-   sociated with mutations in TTN. To define their histopathologic

    bonne University, INSERM UMRS974, GHU Pitie-Salp^etrie`re, Paris,           boundaries and try to overcome the difficulty in assessing the patho-

    France (IN, MB, GB, NBR); AP-HP, GHU Pitie-Salp^etrie`re, Centre de         genic role of TTN variants, we performed a thorough morphological

    Reference des Maladies Neuromusculaires Nord/Est/Ile de France, Paris,      skeletal muscle analysis including light and electron microscopy in

    France (EM, BE, EL, NBR); Department of Translational Medicine,             23 patients with different clinical phenotypes presenting pathogenic

    IGBMC, INSERM U1258, UMR7104, Strasbourg University, Illkirch,              autosomal dominant or autosomal recessive (AR) mutations located

    France (XL, CC, JB, RS, JL); Assistance Publique-Ho^pitaux de Paris         in different TTN domains. We identified a consistent pattern charac-

    (AP-HP), GH Cochin-Broca-Ho^tel Dieu, Laboratoire de Biochimie et           terized by diverse defects in oxidative staining with prominent nu-

    Genetique Moleculaire, Paris, France (JN, FL); Department of Pathology      clear internalization in congenital phenotypes (AR-CM)

    and Genetics, Institute of Biomedicine, University of Gothenburg, Goth-     (n � 10), 6 necrotic/regenerative fibers, associated with endomysial

    enburg, Sweden (CHO, AO); Hospital Nacional de Pediatria J.P. Garra-        fibrosis and rimmed vacuoles (RVs) in AR early-onset Emery-Drei-

    han and Instituto de Investigaciones Neurologicas FLENI, Buenos Aires,      fuss-like (AR-ED) (n � 4) and AR adult-onset distal myopathies

    Argentina (SM, FL, ALT); Neuromuscular Research Center, Tampere             (n � 4), and cytoplasmic bodies (CBs) as predominant finding in he-

    University and University Hospital, Tampere, Finland (BU); Folkhalsan       reditary myopathy with early respiratory failure (HMERF) patients

    Institute of Genetics, Helsinki University, Helsinki, Finland (BU); Centre  (n � 5). Ultrastructurally, the most significant abnormalities, partic-

    National de Recherche en Genomique Humaine (CNRGH), Institut de             ularly in AR-CM, were multiple narrow core lesions and/or clear

    Biologie Franc�ois Jacob, CEA, Evry, France (AB, JFD); Genethon Insti-      small areas of disorganizations affecting one or a few sarcomeres

    tute, Evry, France (IR); and Complex Systems and Translational Bioin-       with M-band and sometimes A-band disruption and loss of thick fil-

    formatics, ICube, Strasbourg University, CNRS UMR7357, Illkirch,            aments. CBs were noted in some AR-CM and associated with RVs

    France (RS, JT)                                                             in HMERF and some AR-ED cases. As a whole, we described recog-

                                                                                nizable histopathological patterns and structural alterations that

Send correspondence to: Norma Beatriz Romero, MD, PhD, Myology Insti-           could point toward considering the pathogenicity of TTN mutations.

    tute, Sorbonne University, GHU La Pitie-Salp^etrie`re, 75013 Paris,

    France; E-mail: nb.romero@institut-myologie.org                             Key Words: Congenital myopathies, Electron microscopy, M-line

                                                                                disruption, Muscle histopathology, Sarcomere disorganizations,

Rainiero A vila-Polo and Edoardo Malfatti contributed equally to this           Titin, TTN-related myopathies.

    work.

                                                                                                      INTRODUCTION

This study was financially supported by Association Franc�aise contre les              Titin is the largest human protein (33 000 amino acids)

    Myopathies (AFM-Telethon, 20323, 21267), AIM Association Insti-             (1, 2) and is encoded by the TTN gene (OMIM *188840) on

    tut de Myologie, the Assistance Publique-Ho^ pitaux de Paris, the           chromosome 2q31 (3�5). Titin is expressed in both skeletal

    Institut National de la Sante et de la Recherche Medicale, the Sor-         and cardiac muscles (6�8) and is located in the sarcomere

    bonne Universite, the University of Strasbourg, the Centre National         extending from the Z-disc to the M-line (9). Its amino-terminal

    de la Recherche Scientifique, the Instituto de Salud Carlos III (M-

    AES 2015), the Fundacion Publica Andaluza para la Gestion de la

    Investigacion en Salud en Sevilla (FISEVI), the University of Gra-

    nada (PhD International Mobility Programme 2014/2015), the France

    Genomique National infrastructure, funded as part of the Investisse-

    ments d'Avenir program managed by the Agence Nationale pour la

    Recherche (ANR-10-INBS-09), and by Fondation Maladies Rares

    within the frame of the "Myocapture" sequencing project, the ANR-

    10-LABX-0030-INRT under the frame program Investissements

    d'Avenir ANR-10-IDEX-0002-02, and the Swedish Research

    Council.



The authors have no duality or conflicts of interest to declare.



VC 2018 American Association of Neuropathologists, Inc. All rights reserved.    1101

Avila-Polo et al  J Neuropathol Exp Neurol � Volume 77, Number 12, December 2018



domain is anchored to the Z-disc interacting with many pro-         data of these patients were systematically retrieved and retro-   Downloaded from https://academic.oup.com/jnen/article/77/12/1101/5144759 by guest on 02 August 2021

teins at this level (10�12). The I-band region is responsible of    spectively analyzed (Table 1). Patients were classified into 4

the elastic property of the protein (13, 14) whereas the A-band     groups according to their clinical features as follows: Group 1:

region represents the largest part of the protein and is a rigid    Autosomal recessive congenital myopathy (AR-CM) (n � 10);

portion tightly associated to myosin, providing stabilization to    Group 2: Autosomal recessive early-onset Emery-Dreifuss-

the sarcomere (5). The carboxy-terminal domain contains a ki-       like myopathy without associated cardiomyopathy (AR-ED)

nase domain. At this level, titin filaments from the adjacent       (n � 4); Group 3: Autosomal recessive young or early-adult

half-sarcomere overlap and connect with other protein ele-          onset distal myopathy (AR-DM) (n � 4); and Group 4:

ments such as myomesin (15) and calpain 3 (16). Titin has a         HMERF (n � 5). All patients underwent open biopsy for mor-

critical role in the maintenance of the sarcomere structure dur-    phological and histochemical analyses of fresh-frozen skeletal

ing the contraction (17�19).                                        muscle tissue.



       Next generation sequencing (NGS) approaches have led         Mutation Analysis

to an exponential increase in the number of identified muta-               Patients or parents gave informed consent for the genetic

tions, either pathogenic mutations or changes of unknown sig-

nificance, in TTN. To date, mostly through NGS methods,             analysis and DNA storage according to French legislation

TTN mutations have been associated with a large spectrum of         (Comite de Protection des Personnes Est IV DC-2012-1693).

clinical conditions ranging from isolated dilated or hypertro-      Genomic DNA was extracted from blood or frozen skeletal

phic cardiomyopathies (MIM #604145; MIM #613765) (20�               muscle by standard methods. DNA was studied by direct se-

23) to numerous skeletal muscle myopathies (MIM #600334,            quencing of exons of TTN gene or exome sequencing. Exome

MIM #608807, MIM #603689, MIM #611705) (24�26). How-                sequencing was performed for patients P1, P2, P3, P4, P5, P7,

ever, not all rare TTN variants are associated with a disease       P8, P9, P10, P17, P18, and P19 with the SureSelect Human

and in this respect a recent study by Savarese et al highlighted    All Exon 50 Mb Capture Library v5, P6 and P14 with SureSe-

how challenging is the assignment of new mutations to a plau-       lect Human All Exon Capture Library v6 (Agilent, Santa

sible titinopathy (27) and that, in all likelihood, new pheno-      Clara, CA) and paired-end sequenced on a HiSeq 2500 (Illu-

types may emerge in the future. For this reason,                    mina, San Diego, CA). Confirmation of variants and segrega-

histopathological phenotype and genotype correlations are of        tion was performed by Sanger sequencing of genomic DNA

critical importance, particularly because functional studies are    and cDNA (Transcript variant IC, References Sequences

possible only for some mutations located in specific TTN            NM_001267550.2), with standard techniques. P20 mutations

domains (28).                                                       were determined by Sanger sequencing. Sequencing

                                                                    primers are available on request. PCR was performed with

       Histopathological changes in TTN-related myopathies          DreamTaq DNA polymerase according to standard protocol

are markedly variable as reported in muscle biopsies from           (Fermentas, Waltham, MA). PCR products were sequenced on

patients with tibial muscular dystrophy ([TMD]; MIM                 an ABI3730xl DNA Analyzer (Applied Biosystems, Foster

#600334) and limb-girdle muscular dystrophy 2J ([LGMD2J];           City, CA), using the Big-Dye Terminator v3.1 kit and ana-

MIM #608807) with rimmed vacuoles (RVs) (29, 30), or he-            lyzed with Sequencher 5.0 software (Gene Codes Corp., Ann

reditary myopathy with early respiratory failure ([HMERF];          Arbor, MI).

MIM #603689) with cytoplasmic bodies (CBs) (31�35).

Moreover, increased nuclear internalization and deficits in ox-     Morphological Studies

idative staining described as minicores/minicore-like lesions              Open muscle biopsy was performed for all patients after

have been reported in early-onset myopathies (28, 36, 37).

Nevertheless, to date, a systematic and exhaustive skeletal         informed consent. Age at biopsy varied from 1 month (P9) to

muscle histopathologic and ultrastructural analysis have not        71 years (P20). The biopsied muscle is reported in Table 2.

been performed in large cohorts of TTN-related conditions.          Samples were analyzed either in our research laboratory at the

                                                                    Myology Institute in Paris, France, or at the Neuropathology

       In order to define histopathologic boundaries of TTN-        laboratory of FLENI-Institute and J.P. Garrahan Hospital in

related myopathies and help both clinicians and geneticists         Buenos Aires, Argentina, or at the Department of Pathology,

supporting the pathogenic role of TTN variants, we report a         Sahlgrenska University Hospital in Gothenburg, Sweden. For

systematic histopathological and ultrastructural analysis of 23     conventional histochemical techniques, 10-lm-thick cryostat

patients with TTN mutations presenting different clinical           sections were stained with hematoxylin and eosin (H&E),

phenotypes.                                                         modified Gomori trichrome, periodic acid Schiff technique,

                                                                    Oil red O, reduced nicotinamide adenine dinucleotide

              MATERIALS AND METHODS                                 dehydrogenase-tetrazolium reductase (NADH-TR), succinic

                                                                    dehydrogenase, cytochrome c oxidase, menadione-nitro blue

Patients                                                            tetrazolium and adenosine triphosphatase preincubated at pH

       Twenty-three patients (14 male and 9 female) of various      9.4, 4.63, 4.35. Digital photographs of each biopsy were

                                                                    obtained with a Zeiss AxioCam HRc linked to a Zeiss Axio-

ethnic backgrounds were included in the present study.              plan Bright Field Microscope and processed with the Axio

Patients P1 to P10, P14, and P17 to P20 (n � 15) are reported       Vision 4.4 software (Zeiss, Oberkochen, Germany).

herein for the first time. Part of the clinical, pathologic or ge-

netic data from patients P11 to P13, P15, P16, and P21 to P23

(n � 8) have been previously reported (35, 38�41). Clinical



1102

      TABLE 1. Clinical Phenotypes and Genetic Data                                                                                                                                  J Neuropathol Exp Neurol � Volume 77, Number 12, December 2018



      Patient Sex, Onset     Clinical Phenotype                     Family     TTN Mutation (Ref Seq NM_001267550.2):    Exon               Inheritance   Titin         Reference

                                                                    Affected     Nucleotide Change/Isoform Modification                                  Domain

                                                                    None

      Group 1                                                       Yes1      c.2137C>T/ p.(Arg713*)                     14                 AR           Z-line         PA

       P1, � M (Childhood) Congenital myopathy                      None      c.95562G>C/ p.(Trp31854Cys)                                                A-band         PA

                                                                              c.56200_56215dup/ p.(Asn18739Ilefs*2)                                      A-band         PA

                                                                    None      c.23444G>A/ p.(Arg7815Gln)                 345                             I-band

                                                                    None      c.79070_79071del/ p.(Tyr26357Cysfs*55)                                     A-band         PA

      P2, � M, 3 years       Congenital myopathy                              c.76502T>C/ p.(Val25501Ala)                290                AR           A-band         PA

                                                                    None      c.10045A>G/ p.(Thr3349Ala)                                                 I-band

                                                                    None      c.4078G>A/ p.(Gly1360Arg)                  82                              Z-line         PA

                                                                    None      c.64688C>G/ p.(Pro21563Arg)                                                A-band         PA

      P3, � F, Birth         Congenital myopathy                              c.97218_97221dupTATT/ p.(Lys32408Tyrfs*2)  327                AR           A-band         PA

                                                                    None      c.35713 � 1G>A/ Intron 162 (not in N2A

                                                                    None                                                 327                                �           PA

                                                                                isoform)                                                                 A-band         PA

                                                                    None      c.53918del/ p.(Gly17973Glufs*18)           43

                                                                    None      c.95867G>A/ p.(Trp31956*)                                                  A-band         (38) (P1)

                                                                    None      c.99415A>G/ p.(Lys33139Glu)                24                              A-band         (38) (P2)

                                                                    None      c.99833dup/ p.(Val33278Serfs*2)                                            A-band         (38) (P3)

      P4, � M, <1 year       Congenital myopathy                              c.71993G>C/ p.(Arg23998Pro)                311                AR           A-band         PA

      P5*, � M, Birth        Congenital myopathy                    Yes2      c.107425del/ p.(Asp35809Thrfs*35)                                          M-line

                                                                    Yes3      c.97417del/ p.(Arg32473Valfs*19)           350                             A-band



                                                                              c.17009G>A/ p.(Trp5670*)                   �                  AR           A-band

                                                                              c.19715-1G>C/ splice                                                       A-band

                                                                              c.29621_29624del/ p.(Glu9874Glyfs*28)      281                             I-band

                                                                              c.102214T>C/ p.(Trp34072Arg)                                               M-line

      P6  F, Birth           Congenital myopathy, mainly distal                                                          346                AR

                                                                              c.106959T>A/ p.(Tyr35653*) (homozygous)                                    M-line

                             Congenital myopathy with severe di-                                                         356

                                lated cardiomyopathy (11 y)                   c.106050del/ p.(Glu35351Asnfs*54)                                          M-line

      P7, � M, 2                                                              c.106978C>T/ p.(Gln35660*)                 356                AR           M-line

                             Congenital myopathy with early dif-              c.105910_105914del/ p.(Thr35304Cysfs*3)                                    M-line

                                fuse contractures and cardiopathy             c.106422del/ p.(Phe35475Serfs*3)           327                             M-line

                                (23 y)                                        c.26877G>A/ p.(Trp8959*)                                                   I-band

      P8*, � F, Birth                                                         c.107387A>C/ p.(Glu35796Ala)               363 (Mex5) AR                   M-line

                             Severe congenital myopathy with

                                arthrogrypotic features                       c.100558_100561dup/ p.(Gly33521Aspfs*25)   350

                                                                              c.107647del/ p.(Ser35883Glnfs*10)

       P9, � M, Birth        Congenital myopathy with early                                                              59                 AR

       P10, � M, Birth          diffuse contractures                          c.98105del/ p.(Pro32702Leufs*15)

                                                                              c.107647del/ p.(Ser35883Glnfs*10)          68

      Group 2                Early-onset recessive Emery-Dreifuss-

       P11*, � M, 10            like without cardiomyopathy                                                              105                AR

       P12*, � F, Childhood

       P13*, � F, 19 months  Early-onset recessive Emery-Drei-                                                           359 (Mex1)

       P14, � M, 20 years       fuss-like without cardiomyopathy

                                                                                                                         361 (360�) (Mex2) AR

                             Early-onset recessive Emery-Drei-

                                fuss-like without cardiomyopathy                                                         359 (358�) (Mex1) AR                                        Titinopathies: Ultrastructural Particularities

                                                                                                                         361 (360�) (Mex3)

                             Young adult recessive proximal                                                              359 (358�) (Mex1) AR

                                weakness with mild contractures                                                          360 (359�) (Mex2)

                                without cardiomyopathy

                                                                                                                         94                 AR

                             Young adult onset recessive distal

                                titinopathy                                                                              363 (Mex5)



      Group 3                                                                                                            358 (357�)         AR           A-band         (5, 39A)

       P15* M, 20 years                                                                                                                                  M-line         (40) (C1)

                                                                                                                                                                        (41) (B)

                                                                                                                         363 (362�) (Mex5)               A-band M-line  (5, 39B)

                                                                                                                                                                        (40) (C2)

      P16* F, 30 years       Young adult onset recessive distal                                                          353 (352�)         AR

                                titinopathy

1103                                                                                                                     363 (362�) (Mex5)



                                                                                                                                                                        (continued)



                             Downloaded from https://academic.oup.com/jnen/article/77/12/1101/5144759 by guest on 02 August 2021

Avila-Polo et al                    Reference                                           (41) (C)                                                                   All listed variations are heterozygous and predicted to affect N2A mature skeletal muscle isoform except otherwise stated.                                                                                                                        J Neuropathol Exp Neurol � Volume 77, Number 12, December 2018

                                                                                            PA                                                                        *Patients are carriers of truncating mutations or of mutations previously reported.

1104                                                                                                PA                                                                                                                                                                                                                                                                                                                       Electron Microscopy (EM)

                                                                                                                PA                                                                                                                                                                                                                                                                                                                   Detailed EM analysis was performed in 19 patients

                                                                                                                     PA

                                                                                                                         (35) (L: II-1)                                  Patients are carriers of 1 truncating mutation and 1 missense mutation found in an exon already reported as mutated in the disease.                                                                                                                  (Table 2). For ultrastructural studies, small muscle samples

                                                                                                                             (35) (K: II-1)                                                                                                                                                                                                                                                                                   were fixed in 2.5% glutaraldehyde, pH 7.4, postfixed in 2% os-

                                                                                                                                 (35) (G: II-2)                                                                                                                                                                                                                                                                               mium tetroxide for 2 hours, dehydrated and embedded in ep-

                                                                                                                                                                                                                                                                                                                                                                                                                              oxy resin. At least 3 blocks from each patient were studied,

                                    Titin                                               M-line                                                                               Patients are carriers of 1 truncating mutation and 1 missense mutation found in an exon never reported as mutated in the disease.                                                                                                                including longitudinal and transverse-oriented samples. Semi-

                                       Domain                                               A-band                                                                              �Segregation in the family was confirmed.                                                                                                                                                                                                     thin sections were stained by toluidine blue and examined in

                                                                                                M-line                                                                             �Numbered as firstly published, according to the old numbering (before October 2013); AR: Autosomal recessive; AD: Autosomal dominant.                                                                                                     light microscopy to select pathological areas. Ultrathin sec-

                                                                                                    A-band                                                                             **Described in the original paper as semirecessive or semidominant (34); M: Male; F: Female; Ref Seq: Reference Sequence; PA: Present Article; HMERF: Hereditary Myopathy with Early Respiratory Failure; 1: sisters; 2: his           tions were stained with uranyl acetate and lead citrate. The

                                                                                                            A-band                                                                        mother (P16); 3: her son (P15); 4: his sister (P18); 5: her brother (P17); 6: her father; 7: her brother; 8: his mother.                                                                                                            grids were observed using a Philips CM120 electron micro-

                                                                                                                A-band                                                                                                                                                                                                                                                                                                        scope (80 kV; Philips Electronics NV, Eindhoven, The

                                                                                                                     A-band                                                                                                                                                                                                                                                                                                   Netherlands).

                                                                                                                         A-band

                                                                                                                             A-band                                                                                                                                                                                                                                                                                                                      RESULTS



                                    Inheritance                                         364 (Mex6) AR          AD   AD   **          **          AD                                                                                                                                                                                                                                                                          Clinical Findings                                                  Downloaded from https://academic.oup.com/jnen/article/77/12/1101/5144759 by guest on 02 August 2021

                                                                                            274                                                                                                                                                                                                                                                                                                                                      Clinical summary and laboratory features of all patients

                                    Exon                                                                       344  344  344 (343�)  344 (343�)  344 (343�)

                                                                                                364 (Mex6) AR                                                                                                                                                                                                                                                                                                                 are provided in Table 1.

                                                                                                    274                                                                                                                                                                                                                                                                                                                              Group 1: AR-CM patients, P1�P10, showed congenital



                                    Family TTN Mutation (Ref Seq NM_001267550.2):       c.107867del/ p.(Leu35956Argfs*16)                                                                                                                                                                                                                                                                                                     hypotonia or early onset diffuse muscle weakness, with con-

                                       Affected Nucleotide Change/Isoform Modification      c.52021C>T/ p.(Arg17341*)                                                                                                                                                                                                                                                                                                         genital arthrogryposis or early development of contractures

                                                                                                c.107867del/ p.(Leu35956Argfs*16)                                                                                                                                                                                                                                                                                             (P8, P9, and P10); associated cardiomyopathy was found in P7

                                                                                                    c.52021C>T/p.(Arg17341*)                                                                                                                                                                                                                                                                                                  and P8.

                                                                                                            c.95185T>C/ p.(Trp31729Arg)

                                                                                                                c.95187G>C/ p.(Trp31729Cys)                                                                                                                                                                                                                                                                                          Group 2: AR-ED patients, P11�P13 have been recently

                                                                                                                     c.95195C>T/ p.(Pro31732Leu)                                                                                                                                                                                                                                                                              reported (38) and P14 is firstly described in this report.

                                                                                                                         c.95195C>T/ p.(Pro31732Leu) (homozygous)

                                                                                                                             c.95134T>C/ p.(Cys31712Arg)                                                                                                                                                                                                                                                                             Group 3: AR-DM patients, P15�P18, showed distal or

                                                                                                                                                                                                                                                                                                                                                                                                                              proximal-distal early severe muscle weakness of the 4 limbs.

                                                                                        Yes4                                                                                                                                                                                                                                                                                                                                  P15 and P16 were described elsewhere (39, 41). P17 and P18

                                                                                                Yes5                                                                                                                                                                                                                                                                                                                          are reported here for the first time.

                                                                                                            Yes6

                                                                                                                 None                                                                                                                                                                                                                                                                                                                Group 4: HMERF group included patients P19�P23.

                                                                                                                     Yes7                                                                                                                                                                                                                                                                                                     Most of them had adult onset weakness with diaphragmatic re-

                                                                                                                          None                                                                                                                                                                                                                                                                                                spiratory failure. Earlier onset (10 years) has been observed in

                                                                                                                             Yes8                                                                                                                                                                                                                                                                                             P19. Patients P21�P23 were previously reported (35).



                                    Clinical Phenotype                                  Young adult recessive proximal &                                                                                                                                                                                                                                                                                                     Molecular Data

                                                                                            distal myopathy                                                                                                                                                                                                                                                                                                                          To identify the mutations in patients without a genetic



                                                                                                Young adult recessive proximal &                                                                                                                                                                                                                                                                                              diagnosis, we performed exome sequencing on genomic DNA

                                                                                                    distal myopathy                                                                                                                                                                                                                                                                                                           from the patients and their parents. Exome sequencing allows

                                                                                                                                                                                                                                                                                                                                                                                                                              a fast and parallel screening of most human genes, and is suit-

                                                                                                            HMERF                                                                                                                                                                                                                                                                                                             able and efficient for the diagnosis of neuromuscular diseases

                                                                                                                HMERF                                                                                                                                                                                                                                                                                                         and the analysis of large genes such as TTN (42). This ap-

                                                                                                                     HMERF                                                                                                                                                                                                                                                                                                    proach also covers any newly discovered gene for the

                                                                                                                         HMERF                                                                                                                                                                                                                                                                                                disorder.

                                                                                                                             HMERF

                                                                                                                                                                                                                                                                                                                                                                                                                                     For all patients, we found known or novel mutations in

                TABLE 1. Continued  Patient Sex, Onset                                  P17*, � M, 20 years                                                                                                                                                                                                                                                                                                                   TTN (Table 1). These changes were confirmed by Sanger se-

                                                                                                P18*, � F, 30 years                                                                                                                                                                                                                                                                                                           quencing, and their familial segregation validated when paren-

                                                                                                         Group 4                                                                                                                                                                                                                                                                                                              tal DNA was available. Parents of patients P1, P2, P3, P4, P5,

                                                                                                             P19* F, 10 years                                                                                                                                                                                                                                                                                                 P7, P8, P9, P10, P11, P12, P13, P14, P17, and P18 were

                                                                                                                 P20* M, 50 years                                                                                                                                                                                                                                                                                             screened to confirm the segregation of the mutations and to

                                                                                                                     P21* F, 54 years                                                                                                                                                                                                                                                                                         verify that TTN mutations are on opposite alleles (in trans po-

                                                                                                                          P22* M, 25 years                                                                                                                                                                                                                                                                                    sition). Most of the patients harbored compound heterozygous

                                                                                                                              P23* M, 38 years                                                                                                                                                                                                                                                                                mutations (21 patients), at least one of them was a truncating

                                                                                                                                                                                                                                                                                                                                                                                                                              mutation (frameshift, nonsense mutation or mutation affecting

                                                                                                                                                                                                                                                                                                                                                                                                                              an essential splice site) leading to a predicted protein trunca-

                                                                                                                                                                                                                                                                                                                                                                                                                              tion or degradation (Table 1). The second mutations were

                                                                                                                                                                                                                                                                                                                                                                                                                              either truncating mutations or rare missense mutations.

                                                                                                                                                                                                                                                                                                                                                                                                                              Two cases carried homozygous mutations: P11 (AR-ED) and

J Neuropathol Exp Neurol � Volume 77, Number 12, December 2018                      Titinopathies: Ultrastructural Particularities



TABLE 2. Patient Data and Summarized Histological Findings



Patient Age at Biopsy Muscle Biopsied Method           Light Microscopy             Electron Microscopy                      Reference



Group 1



P1       8 y; 13 y  NR                LM, EM Well-defined areas of defective oxi- Focal and short areas of myofibrillar PA

                    Vastus lateralis

                    Deltoid                   dative staining, some nuclear         disorganization, nuclear internal-

                    Vastus lateralis

                    Deltoid                   internalizations, type 1 fiber        izations; some clear areas with

                    Deltoid

                    Deltoid                   predominance                          myofilaments loss, M-line disrup-

                    Deltoid

                    Vastus lateralis                                                tion and almost intact Z-line

                    Vastus lateralis

P2       7y                           LM, EM Multiple and well-delimited areas of Focal and multiple areas of myofi- PA



                                              uneven oxidative staining, central- brillar disarray resembling mini-



                                              ized nuclei, type 1 fiber             cores, nuclear internalizations



                                              predominance                                                                                Downloaded from https://academic.oup.com/jnen/article/77/12/1101/5144759 by guest on 02 August 2021



P3       3y                           LM, EM Multiple and well-delimited areas of Foci of myofibrillar disorganization PA



                                              uneven oxidative staining, promi- with Z-band streaming running



                                              nent nuclear centralizations, type 1 over few sarcomeres, some large



                                              fiber uniformity                      clear areas with myofilaments



                                                                                    loss, M-line disruption and almost



                                                                                    intact Z-line



P4       7y                           LM, EM Type 1 fiber predominance, internal- Focal and multiple areas of            PA



                                              ized nuclei, uneven oxidative         myofibrillar disarray resembling



                                              staining                              minicores, nuclear internaliza-



                                                                                    tions, Z-line streaming spanning



                                                                                    all along the sarcomere resembling



                                                                                    "pennants"



P5       31 y                         LM, EM Uneven oxidative staining, numerous Z-line streaming spanning all along PA



                                              internalized nuclei, type 1 fiber     the sarcomere or as small



                                              predominance                          "pennants", rare focal areas of



                                                                                    myofibrillar disorganization



P6       49 y                         LM, EM Type 1 fiber predominance, numer- Z-line streaming spanning all along PA



                                              ous internalized nuclei, uneven ox- the sarcomere or as small



                                              idative staining, increased           "pennants", internalized nuclei in



                                              interstitial fat and connective tis-  rows, small RVs, focal areas of



                                              sue, occasional COX negative          myofibrillar disorganization



                                              fibers.



P7       12 y                         LM, EM Multiple and well-delimited areas of Focal and multiple areas of myofi- PA



                                              uneven oxidative staining, promi- brillar disarray resembling mini-



                                              nent nuclear centralizations, type 1 cores, granular streaming spanning



                                              fiber uniformity                      all along the sarcomere or as small



                                                                                    "pennants", internalized nuclei



P8       23 y                         LM, EM Prominent nuclear centralizations, Z-line streaming spanning along the PA



                                              type 1 fiber uniformity, presence     sarcomere or as small "pennants",



                                              of rare areas of uneven oxidative     internalized nuclei



                                              staining



P9       1m                           LM, EM Fiber caliber variation, many small Focal and multiple areas of myofi- PA



                                              fibers, internalized nuclei, uneven brillar disarray resembling mini-



                                              oxidative staining, fuchsinophilic    cores, clear areas with loss of



                                              protein inclusions                    myofilaments with almost intact



                                                                                    Z-line, CBs, numerous fibers with



                                                                                    marked sarcomere disorganization



P10      4 m; 4 y                     LM, EM Fuchsinophilic protein inclusions, CBs, nuclear filamentous inclusions, PA



                                              uneven oxidative staining, nuclear atrophic fibers with degenerated



                                              internalizations                      myofibrils, duplication of triads



                                                                                                                             (continued)



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TABLE 2. Continued



Patient Age at Biopsy Muscle Biopsied Method   Light Microscopy                            Electron Microscopy                     Reference



Group 2



P11      7y          Deltoid           LM, EM  Necrotic/regenerating fibers, some      Clear areas with loss of myofila-       (38) (P1)

                     Deltoid           LM, EM     nuclear internalizations, and type      ments with almost intact Z-line,     (38) (P2)

P12      43 y; 52 y                               1 fiber predominance                    internalized nuclei

                     Vastus lateralis  LM, EM                                                                                  (38) (P3)

P13      9y                                    Rare necrotic/regenerating fibers,      CBs, sometimes with dense material                       Downloaded from https://academic.oup.com/jnen/article/77/12/1101/5144759 by guest on 02 August 2021

                     Deltoid           LM, EM     nemaline bodies, RVs, uneven ox-        in the peripheral halo, nemaline     PA

P14      47 y                                     idative staining, and some nuclear      bodies, nuclear tubulo-filamentous

                     Deltoid                      internalizations                        inclusions, RVs/AV, clear areas

                                                                                          with loss of myofilaments with al-

                     Deltoid                   Type 1 fiber predominance, rods,           most intact Z-line, internalized

                     Deltoid                      RVs, uneven oxidative staining,         nuclei

                     NR                           internalized nuclei, necrotic and

                     Deltoid                      regenerative fibers                  CBs, sometimes with dense material

                                                                                          in the peripheral halo, nemaline

                                               Uneven oxidative staining, internal-       bodies, tubulo-filamentous mate-

                                                  ized nuclei, increased interstitial     rial, RVs, and filamentous nuclear

                                                  connective tissue, occasional COX       inclusions, focal Z-line streaming

                                                  negative fibers                         spanning all along the sarcomere

                                                                                          or as small "pennants".



                                                                                       Z-line streaming spanning all along

                                                                                          the sarcomere or as small

                                                                                          "pennants", mini-cores, internal-

                                                                                          ized nuclei, nemaline rods in some

                                                                                          fibers, mitochondrial

                                                                                          abnormalities



Group 3



P15      42 y                          LM, EM  Uneven oxidative staining, internal-    Clear areas with loss of myofila-       (39) (5A)

                                                  ized nuclei                             ments with almost intact Z-line, Z-  (40) (C1)

P16      69 y                          LM, EM                                             line streaming spanning all along    (41) (B)

                                       LM      Uneven oxidative staining, internal-       the sarcomere or as small

P17      54 y                          LM         ized nuclei                             "pennants", large areas of protein   (39) (5B)

                                                                                          material and myofibrillar loss, in-  (40) (C2)

                                               Necrotic fibers, few RVs, internal-        ternalized nuclei                    (41) (C)

                                                  ized nuclei, mild uneven oxidative

                                                  staining, Type 1 fiber predomi-      Z-line streaming spanning all along     PA

                                                  nance, mild endomysial fibrosis         the sarcomere or as small

                                                                                          "pennants", large areas of accumu-

                                               Few internalized nuclei (only H&E          lated protein material with myofi-

                                                  staining available)                     brillar loss.



                                                                                       NA



P18      NS                                                                            NA                                      PA



Group 4



P19      10 y                          LM, EM CBs, uneven oxidative staining, in-      CBs sometimes with dense protein PA

                                                       ternalized nuclei                  aggregates in the peripheral halo,

                                                                                          RVs, Z-line streaming as small

                                                                                          "pennants", large areas of protein

                                                                                          material and myofibrillar loss,

                                                                                          atrophic fibers with disorganized

                                                                                          internal structure with thin-fila-

                                                                                          ments and small segments of

                                                                                          dense material



                                                                                                                                   (continued)



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TABLE 2. Continued



Patient Age at Biopsy Muscle Biopsied Method  Light Microscopy                          Electron Microscopy                  Reference



P20  71 y           Peroneus longus LM        Rods, CBs fuchsinophilic protein      NA                                   PA



                                              inclusions, slight increase in endo-



                                              mysial fibrosis, type 1 fiber pre-



                                              dominance, internalized nuclei



P21  55 y           Deltoid  LM, EM Type 1 fiber predominance, CBs,                 CBs sometimes with dense material (35) (L: II-1)



                                              RVs, uneven oxidative staining,       in peripheral halo, protein inclu-



                                              internalized nuclei                   sions, RVs, large areas of protein



                                                                                    material and myofibrillar loss, in-



                                                                                    ternalized nuclei



P22  27 y           Deltoid  LM               CBs, RVs, uneven oxidative staining, NA                                    (35) (K: II-1)                                      Downloaded from https://academic.oup.com/jnen/article/77/12/1101/5144759 by guest on 02 August 2021



                                              internalized nuclei



P23  48 y           Deltoid  LM EM CBs, RVs, regenerative fibers, inter- CBs, large areas of protein material (35) (G: II-2)



                                              nalized nuclei                        and myofibrillar loss, atrophic



                                                                                    fibers with disorganized internal



                                                                                    structure with thin-filaments and



                                                                                    small segments of dense material



   Abbreviations: y: years; m: months; NR: not referred; LM: light microscopy; EM: electron microscopy; PA: present article; CBs: cytoplasmic bodies; RVs: rimmed vacuoles;

NA: not available; H&E: hematoxylin and eosin.



FIGURE 1. Histochemistry from group 1 patients (AR-CM). P3 (A�C): (A) H&E. Presence of numerous fibers harboring

centralized nuclei. (B) NADH. The majority of muscle fibers show multiple and irregular areas of defective oxidative reaction. (C)

ATPase 9.4. Type 1 fiber predominance. P5 (D�F): (D) H&E. Great fiber size diameter variation and presence of multiple nuclear

internalization in numerous fibers. (E) NADH. Multiple and irregular centrally placed areas of defective oxidative reaction. (F)

ATPase 9.4. Type 1 fiber predominance.



P22 (HMERF). Several mutations were previously known or            the protein, they mostly were located within the A-band (9

affected exons already mutated in the disease. The muta-           of 10 cases). I-band was involved in 3 of 10 cases, and both

tions were located in different protein domains (Table 1).         M-line and Z-line in 2 of 10 cases, respectively. As recently

Patients from Group 1 (AR-CM) had the most heteroge-               reported, patients P11�P13 from Group 2 (AR-ED) had TTN

neous results. Although variants were distributed all along        mutations located in exons coding for the M-line domain



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FIGURE 2. Electron microscopy studies from Group 1 patients (AR-CM). (A, B) P3. Characteristic lesions showing evident loss of    Downloaded from https://academic.oup.com/jnen/article/77/12/1101/5144759 by guest on 02 August 2021

thick myofilaments with M-line and A-line dissolution and slight fragmentation of Z-line involving a few or several sarcomeres

and myofibrils. (C, D) P5 and P7. Small areas of myofibrillar disarray involving one or few sarcomeres with dispersion of Z-line

material resembling small "pennants". (E) P1. Focal and large area of myofibrillar disorganization with Z-line streaming and

paucity of mitochondria. (F) P1. Small area of sarcomeric disarray with accumulation of Z-line material spanning one sarcomere.

Areas of myofibrillar disorganization extended through the adjacent myofibrils.



(Mex1�Mex3) (38). P14 showed a similar phenotype with         different TTN exons coding for M-line domain (Mex) had

severe proximal weakness mainly in lower limbs and limita-    calpain deficiency without mutations in CAPN3.

tion in abduction of the arms due to mild contracture of the

shoulder, but mutations were located in exons 363/Mex5        Morphological Findings

and 94 (I-band). In Group 3 (AR-DM), a combination of                Detailed histopathologic analysis is reported in Table 2.

Mex5/Mex6 mutations and a second mutation involving                  Group 1: AR-CM (P1-P10) (Figs. 1 and 2). Muscle biop-

A-band domain was present in all patients (39�41). Finally,

HMERF patients carried several reported mutations in exon     sies from all cases showed multiple small irregular and ran-

344 (35). We studied Calpaine 3 on Western blot in 5          domly distributed areas of reduced/absent oxidative activity or

patients (P6, P11, P12, P13, and P14). Four patients (P11,    better-defined core areas (P1, P2, P3, P7) associated with mild

P12, P13, and P14) harboring at least one mutation in         fiber size variability, type 1 fiber predominance and increased



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FIGURE 3. Histochemistry from Group 2 (AR-ED) and Group 3 patients (AR-DM). (A�C) P13 (AR-ED): (A) H&E. Presence of great           Downloaded from https://academic.oup.com/jnen/article/77/12/1101/5144759 by guest on 02 August 2021

round fibers size variation with numerous atrophic fibers, some necrotic fibers, rimmed vacuoles (arrow), internalized nuclei and

endomysial fibrosis. (B) NADH. Numerous fibers showing diffuse alterations of oxidative staining conferring a lobulated aspect

to smaller fibers. (C) Type 1 fiber predominance. (D�F) P17 (AR-DM). (D) H&E. Fibers type variation, prominent nuclear

internalizations and mild endomysial fibrosis, necrotic/regenerative fibers (arrow). Presence of some rimmed vacuoles (GT in top

right corner). (E) NADH. Irregular areas of uneven oxidative staining. (F) ATPase 9.4. Marked type 1 fiber predominance.



nuclear internalizations (Fig. 1A�F). Increased frequency of       most of the cases. Ultrastructural study showed also the pres-

nuclear centralizations was evident in 4 cases (P2, P3, P7, P8).   ence of clear small and focal areas of sarcomere M-line disso-

In addition, P9 and P10 displayed numerous CBs in atrophic         lution spanning one or a few sarcomeres with almost complete

fibers. Using EM, we identified variable length sarcomere          preservation of the Z-line (P11, P12) (Fig. 4A, B), and dense

disorganizations characterized by (i) clear small areas of         Z-line material disrupted (Fig. 4C), or resembling small

M-line dissolution by subsequent disintegration of thick fila-     "pennants" (P13, P14). CBs were observed in P12 and P13;

ments, running along one or a few sarcomeres with preserva-        some of them showed small segments of dense material

tion of the Z-line structure (P1, P3, P7, P9) (Fig. 2A, B); some   among the thin filaments in the peripheral halo. Moreover,

areas of myofibrillar disorganization extended through the ad-     nemaline bodies (P12, P13, P14) with the characteristic square

jacent myofibrils; (ii) focal areas of diffusion of Z-line mate-   lattice structure (Fig. 4D), RVs containing degradation prod-

rial resembling small "pennants" starting from the Z-line (P4,     ucts (P13, P14), tubulofilamentous sarcoplasmic (P13) and nu-

P5, P6, P7, P8) (Fig. 2C, D); sometimes, the electron dense        clear inclusions (P12, P13) were also observed.

material appeared to span the full width of a sarcomere

(Fig. 2F); (iii) many focal areas of sarcomeric disruption af-            Group 3: AR-DM (P15�P18) (Figs. 3D�F, 5A�C). Mus-

fecting a few sarcomeres with Z-line streaming and sharp lim-      cle biopsies showed mild irregular disorganizations at oxida-

its from the adjoining normal sarcomeres with paucity of           tive staining associated with mild to moderate myopathic

mitochondria, evoking classical minicores (P1, P2, P3, P4, P6,     changes (Fig. 2D�F). Few necrotic and regenerative fibers, as

P7, P9) (Fig. 2E). Moreover, P9 and P10 showed additional          well as RVs in sparse fibers were evident in P17. By EM, we

changes as CBs (P9, P10), nuclear inclusions corresponding to      showed the presence of small and focal areas involving one

tubulofilamentous aggregates (P10), duplication of triads          sarcomere as clear areas with loss of myofilaments including

(P10) or atrophic fibers showing disorganized internal struc-      M-line dissolution with almost intact Z-line (P15) (Fig. 5A),

ture with thin filaments and small segments of dense Z mate-       Z-line diffusion spanning all along the sarcomere (Fig. 5B) or

rial (P9, P10). Internalized/centralized nuclei were common in     resembling small "pennants" (P15, P16), or large areas of ac-

most of the cases.                                                 cumulated dark protein material and myofibrillar striation loss

                                                                   (P15, P16) (Fig. 5C).

       Group 2: AR-ED (P11�P14) (Figs. 3A�C, 4). Muscle bi-

opsies showed a dystrophic pattern with marked fiber size var-            Group 4: HMERF (P19�P23) (Figs. 5D�F, 6). All biop-

iability, necrotic and regenerative fibers, endomysial fibrosis,   sies showed internalized nuclei (Fig. 6A), and numerous fuch-

numerous RVs and sometimes rods or CBs (Fig. 3A�C). In ad-         sinophilic inclusions corresponding to CBs, presenting a

dition, irregularities in oxidative staining were also evident in  remarkable circular disposition in some fibers in P19 and P21

                                                                   (Fig. 6B�D). By EM some CBs showed small electron dense



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FIGURE 4. Electron microscopy from Group 2 (AR-ED) (A) P12. Distinctive lesion showing loss of myofilaments with M-line                Downloaded from https://academic.oup.com/jnen/article/77/12/1101/5144759 by guest on 02 August 2021

dissolution, disintegration of thick filament and almost preserved Z-line, involving a few sarcomeres and myofibrils; (B) Clear

areas of myofibrillar disintegration extending to the adjacent sarcomeres corresponding to dissolution of M-band structure, with

almost intact Z-line. (C) P14. Small areas of disorganization of the structure with Z-line material accumulation occasionally

reminding a classical minicore. (D) P12. Cytoplasmic elongated nemaline bodies (rods), with the characteristic square lattice

structure (in top right corner).



amorphous inclusions among the thin filaments in the periph-      scaffolding as common histopathologic lesions associated

eral halo (P19 and P21) (Fig. 5D, E). Widespread abnormal         with TTN pathogenic mutations.

areas corresponding to accumulated filamentous material and

damage of myofibrils with loss of striations were frequently                              DISCUSSION

observed (P19, P21, P23). Furthermore, we rarely found focal             TTN-related myopathies comprise a large group of dif-

sarcomere disruptions with small "pennants" starting from the     ferent clinical entities (24�26). The relatively recent employ-

Z-line (P19, P23). Eventually, we encountered some atrophic       ment of NGS techniques has led and probably will continue to

fibers with completely disorganized internal structure and rods   lead to increased numbers of genetic variants described in

(P19), and rimmed/autophagic vacuoles (P19, P21, P23)             TTN as well as new associated clinical phenotypes (28, 38, 43,

(Fig. 5F).                                                        44). Our study focuses on the description of recessive TTN

                                                                  cases and HMERF cases. Interestingly, while HMERF is usu-

Summary                                                           ally a dominant disorder, P22 presented with homozygous

       Overall, Group 1 (AR-CM) was characterized by multi-       p.Pro31732Leu mutation. This mutation (initially described as

                                                                  p.Pro30091Leu) was reported by Palmio et al in 2014 as a

ple and small particular areas of sarcomere disorganization       semirecessive mutation since some heterozygous carriers

distributed through the muscle fibers. In AR-ED and AR-DM,        don't develop a disease and some do (37). An outstanding di-

sarcomere disruptions were associated with mild myopathic         agnostic challenge is the assignment of a pathogenic value to

changes or moderate dystrophic pattern 6 RVs. In HMERF            the already huge and still increasing number of TTN sequence

patients, CBs were the main feature, with a typical but not       variants identified with NGS (27). Moreover, reliable func-

constant circular peripheral distribution.                        tional tests for the interpretation of single variants are lacking.

                                                                  However, considering the high number of variants of uncertain

       As a whole, in all muscle biopsies we identified variable  significance in the TTN gene, confrontation of molecular,

sarcomere disruptions suggesting a loss of sarcomeric



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FIGURE 5. Electron microscopy studies from Group 3 (AR-DM). (A) P15. Loss of myofilaments with M-line dissolution (in the              Downloaded from https://academic.oup.com/jnen/article/77/12/1101/5144759 by guest on 02 August 2021

central area of the image) and preserved Z-line involving one sarcomere; and in a small part are noted reminiscent of M-band.

(B) P16. Streaming of dark material starting from the Z-line and spanning all along the sarcomere; (C) P15. Large areas of

accumulated filamentous/granular material and myofibrillar striation loss. EM studies from Group 4 (HMERF). (D) P21. Muscle

fiber with subsarcolemmal cytoplasmic bodies disposed in a circle. (E) P21. Compact central area of a cytoplasmic body

harboring small electron-dense structures in the peripheral region. (F) P19. Autophagic material and cellular debris.



clinical and morphological data is crucial for the establishment    disclosing the presence of distinctive small and focal areas of

of the molecular diagnosis.                                         sarcomere disorganizations with M-line dissolution in all

                                                                    patients (Fig. 4A, B). Some of CBs had an atypical aspect with

       With the morphological studies of 23 TTN mutated             small dense material in the peripheral halo (Table 2).

patients, we intended to correlate specific histopathological

lesions with each different clinical group of patients. AR-CM              Group 3 patients P15 and P16 were originally consid-

patients (P1�P10) from Group 1 presented a typical congenital       ered as severe early-onset TMD with proximal involvement

myopathy phenotype (Table 1). Cardiomyopathy was present            (39), and shared a mutation in exon 363/Mex5 but harbored

in 2 cases (P7 and P8) and was reported in a clinically affected    different second truncating mutations that explained their

sister of P2. All patients harbored recessive compound hetero-      more severe phenotype (39�41) allowing them to be redefined

zygous mutations in different exons of TTN involving different      as AR-DM. P17 and P18 harbored the same 2 mutations in

domains but predominantly located in the A-band. Muscle bi-         exons 364/Mex6 and 274. Muscle biopsies revealed multiple

opsies showed disorganizations of the mesh of the intermyofi-       nuclear internalization and uneven oxidative staining. Mild

brillar network at oxidative staining as predominant findings,      variability in the size of the fibers, slight increase in endomy-

associated with type 1 fiber predominance, internalized or cen-     sial connective tissue and some RVs were evident in P17. EM

tralized nuclei, corresponding to some extent to previously de-     mainly showed both focal and large areas of disorganizations

scribed pathological spectrum of the disorder (28, 36, 37).         with myofibrillar/filaments loss (Fig. 5A�C) (P15 and P16).

Nevertheless, ultrastructural studies (Table 2) consistently

revealed common and relevant features: (1) small clear areas of            Group 4 included HMERF patients (P19�P23) charac-

focal myofibrillar disintegration with loss of thick filament cor-  terized by severe early respiratory insufficiency with variable

responding to dissolution of M-band structure, and sometimes        degree of muscular involvement. P19 showed uncommon

also A-band, with almost intact Z-line (Figs. 2A, B, 7A, B); (2)    early-onset at 10 years old. All the patients harbored missense

areas with Z-line diffusion spanning all along the sarcomere, or    TTN mutations in the same TTN exon 344 (35). Presence of

resembling small "pennants" (Fig. 2C, D, F); and (3) focal          CBs was the common and most prominent histological feature

myofibrillar disorganizations with Z-line streaming and paucity     (Fig. 6). CBs were preferentially subsarcolemmal, sometimes

of mitochondria, involving a few sarcomeres (Fig. 2E).              with a circular peripheral distribution of CBs as described

                                                                    (45). EM disclosed that some of them harbored the presence

       Patients from Group 2 with AR-ED (P11�P14) harbored          of short segments of dense material in the peripheral halo

compound heterozygous (P12, P13, P14) or homozygous                 (Fig. 5D, E). Variable length of sarcomere disorganizations

(P11) mutations involving M-line protein domains. Muscle bi-        has also been reported in biopsies from HMERF patients (34,

opsies had a variably severe dystrophic pattern with RVs, rods      45�47). Our cases showed mainly large areas of protein

and CBs. Our detailed ultrastructural analysis allowed              material deposit (P19, P21, P23) and Z-line streaming



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FIGURE 6. Histochemistry from P21, Group 4 (HMERF). (A) H&E. Fibers size variability and internalized nuclei. Presence of fibers     Downloaded from https://academic.oup.com/jnen/article/77/12/1101/5144759 by guest on 02 August 2021

with cytoplasmic bodies. (B) Modified Gomori trichrome. Fibers show numerous and multiple fuchsinophilic rounded inclusions

corresponding to cytoplasmic bodies. (C) NADH. Areas of defective oxidative staining corresponding to the zone occupied by

the cytoplasmic bodies with particular circular and peripheral distribution. (D) ATPase 9.4 Some fibers harbor areas devoid of

reactions corresponding to the cytoplasmic bodies.



resembling small "pennants" (P19, P23). Atrophic fibers                  Of note, these restricted and focal sarcomere abnormali-

showed complete sarcomere disorganization, rods and               ties identified in TTN-related myopathies appear different

rimmed/autophagic vacuoles (P19, P21).                            from classical cores or minicores lesions as observed in myop-

                                                                  athies related to RYR1 (OMIM *180901) and SEPN1 (OMIM

       As a whole, we identified here that TTN pathogenic         *606210) genes. Indeed, ultrastructurally, typical cores found

mutations cause a large spectrum of histopathologic lesions       in RYR1 mutated patients correspond to wide areas of com-

always associated with particular sarcomere disruptions. Al-      pacted and disorganized myofibrils, with Z-line streaming and

though one could imagine that the presence of sarcomeric pa-      absence of mitochondria extending over numerous sarcomeres

thology is as an expected finding related to the loss of titin    or almost along the full length of the fibers; they are sharply

intrinsic properties, the above mentioned particular sarcomeric   demarcated from the normally structured zones of the muscle

disruption presented common elements such as focal myofi-         fibers (48). However, mostly in RYR1 recessives, the core

brillar disintegration with loss of thick filament corresponding  areas frequently occupied the whole myofiber cross sectional

to dissolution of M-band structure, with almost intact Z-line,    and extended to a moderate number of sarcomeres in length

that we have never observed in the EM analyses of muscle bi-      (49). In contrast, the classical minicores as found in SEPN1-re-

opsies from other congenital diseases. The sarcomere disrup-      lated myopathies have poorly defined borders and are charac-

tion observed initially on the band M as shown in Figure 7A�      terized by the presence of multiple foci of myofilamentary

D, then in Figures 2B and 5A, can be extended later on the        disorganization, with Z-line streaming running over a few sar-

whole of the sarcomere structure, as shown in Figures 2A and      comeres, even if occasionally they are longer; mitochondria

4A. The dissolution of M line with almost intact Z line could     are absent from the altered areas (48). Additionally, and this is

be considered as an early lesion (Fig. 7) and, clearly, there     a key point in our work, these "minicore" lesions never appear

may be different degrees of disruption of the sarcomere. Thus,    as focal clear areas of myofibrillar disruption involving one or

these lesions might be considered as a common and priming         few sarcomeres, with M-line disintegration and some loss of

myofibril damage that successively lead to the development of     filaments in the central part of the abnormal areas associating

multiple and variable histopathological alterations.



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J Neuropathol Exp Neurol � Volume 77, Number 12, December 2018     Titinopathies: Ultrastructural Particularities



FIGURE 7. High-magnification electron microscopy studies from P3 (AR-CM) (A, B), and P15 (AR-DM) (B, C). These images                                 Downloaded from https://academic.oup.com/jnen/article/77/12/1101/5144759 by guest on 02 August 2021

show slight abnormalities, only identified by especially M-band disruption, without A-band alterations, which could be

considered as initial or early changes.



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