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
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
收藏
页码:800 / 810
页数:11
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