Meeting on data sharing for Duchenne 21-22 March 2019 Amsterdam, the Netherlands

被引：3

作者：

Verhaart, Ingrid E. C. ^{[1
,2
,25
]}

't Hoen, Peter A. C. ^{[3
,6
]}

Roos, Marco ^{[2
,5
]}

Vroom, Elizabeth ^{[1
,4
,15
]}

Mons, Barend ^{[5
]}

Isla, Julian ^{[7
]}

Ludena, Yolanda ^{[7
]}

Goemans, Nathalie ^{[8
]}

Campbell, Craig ^{[9
]}

Niks, Erik ^{[10
]}

Guglieri, Michela ^{[11
,12
]}

Evangelista, Teresinha ^{[13
]}

Furlong, Pat ^{[14
,15
]}

Montolio, Marisol ^{[16
]}

Fegan, Gary ^{[17
]}

Johnson, Alex ^{[15
,18
]}

Zito, Ilaria ^{[19
]}

Athanasiou, Dimitrios ^{[15
,20
]}

Franken, Mirjam ^{[1
]}

Neven, Floor Knuistingh ^{[1
]}

Bergsma, Arjen ^{[1
]}

Lamy, Francois ^{[21
]}

Hofmeister, Sally ^{[15
]}

Gumus, Gulcin ^{[22
]}

Stoyanova, Violeta ^{[23
,24
]}

Spitali, Pietro ^{[25
]}

Meijer-Krom, Yvonne ^{[10
]}

Godfrey, Josie ^{[18
]}

Nafria Escalera, Begonya ^{[26
,27
]}

Tournavitis, George ^{[26
]}

Bakker, Suzie-Ann ^{[15
]}

Paliouras, Giorgios ^{[20
,28
,29
]}

Delage, Abdallah ^{[30
]}

Berrens, Marianne ^{[31
]}

Anderton, Matt ^{[32
]}

Bergman, Annika ^{[33
]}

机构：

[1] Duchenne Parent Project NL, Veenendaal, Netherlands

[2] Leiden Univ, Med Ctr, Dept Human Genet, Leiden, Netherlands

[3] Radboud Univ Nijmegen, Med Ctr, Radboud Inst Mol Life Sci, Ctr Mol & Biomol Informat, Nijmegen, Netherlands

[4] World Duchenne Org UPPMD, Veenendaal, Netherlands

[5] Leiden Univ, Med Ctr, Dept Human Genet, Leiden, Netherlands

[6] Radboud UMC, Netherlands Bioinformat, Nijmegen, Netherlands

[7] Fdn 29, Madrid, Spain

[8] Univ Hosp Leuven, Dept Pediat & Child Neurol, Leuven, Belgium

[9] London Hlth Sci Ctr, London, ON, Canada

[10] Leiden Univ, Med Ctr, Dept Neurol, Leiden, Netherlands

[11] Dystrophy Res Ctr, John Walton Muscular, Newcastle Upon Tyne, Tyne & Wear, England

[12] Inst Med Genet, MRC Ctr Neuromuscular Dis, Newcastle Upon Tyne, Tyne & Wear, England

[13] CHU Pitie Salpetriere, Inst Myol, Paris, France

[14] Parent Project Muscular Dystrophy, Middletown, OH USA

[15] World Duchenne Org, Veenendaal, Netherlands

[16] Duchenne Parent Project Spain, Madrid, Spain

[17] Action Duchenne, London, England

[18] Duchenne UK, London, England

[19] Parent Project Onlus, Rome, Italy

[20] MDA Hellas, Athens, Greece

[21] AFM Telethon, Evry, France

[22] Eurordis, Madrid, Spain

[23] European Medicines Agcy, Amsterdam, Netherlands

[24] Medicines Evaluat Board, Utrecht, Netherlands

[25] Leiden Univ, Med Ctr, Dept Human Genet, Leiden, Netherlands

[26] Share4Rare, Omada, Spain

[27] St Joan de Deu Hosp Barcelona, Barcelona, Spain

[28] Duchenne Data Fdn, Athens, Greece

[29] NCSR Dimokritos, Athens, Greece

[30] PTC Therapeut, Steinhausen, Switzerland

[31] Santhera, Pratteln, Switzerland

[32] Wave Life Sci, Oxford, England

[33] Sarepta Therapeut, Zurich, Switzerland

来源：

NEUROMUSCULAR DISORDERS | 2019年 / 29卷 / 10期

关键词：

MUSCULAR-DYSTROPHY; RD-CONNECT; SURVIVAL; REGISTRIES; BIOBANKS; LIFE;

D O I：

10.1016/j.nmd.2019.08.010

中图分类号：

R74 [神经病学与精神病学];

学科分类号：

摘要：

引用

页码：800 / 810

页数：11

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