Eight years after an international workshop on myotonic dystrophy patient registries: case study of a global collaboration for a rare disease (vol 13, 155, 2018)

Por: Wood, L, Bassez, G, Bleyenheuft, C, Campbell, C, Cossette, L, Jimenez-Moreno, AC, Dai, Y, Dawkins, H, Diaz-Manera, J, Dogan, C, el Sherif, R, Fossati, B, Graham, C, Hilbert, J, Kastreva, K, Kimura, E, Korngut, L, Kostera-Pruszczyk, A, Lindberg, C, Lindvall, B, Luebbe, E, Lusakowska, A, Mazanec, R, Meola, G, Orlando, L, Takahashi, MP, Peric, S, Puymirat, J, Rakocevic-Stojanovic, V, Rodrigues, M, Roxburgh, R, Schoser, B, Segovia, S, Shatillo, A, Thiele, S, Tournev, I, van Engelen, B, Vohanka, S, Lochmuller, H

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Publicada: 15 ago 2019

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Filiaciones:
Wood, L:
 Newcastle Univ, Inst Med Genet, Newcastle Upon Tyne, Tyne & Wear, England

Bassez, G:
 Hop Henri Mondor, Ctr Reference Malad Neuromusculaires, Paris, France

Bleyenheuft, C:
 Sci Inst Publ Hlth, Brussels, Belgium

Campbell, C:
 Western Univ, London, ON, Canada

Cossette, L:
 Univ Laval, Ctr Rech, CHU Quebec, Quebec City, PQ, Canada

Jimenez-Moreno, AC:
 Newcastle Univ, Inst Med Genet, Newcastle Upon Tyne, Tyne & Wear, England

Dai, Y:
 Chinese Acad Med Sci, Dept Neurol, Peking Union Med Coll Hosp, Beijing, Peoples R China

Dawkins, H:
 Off Populat Hlth Genom, Perth, WA, Australia

Diaz-Manera, J:
 Hosp Santa Creu & Sant Pau, Neuromuscular Disorders Unit, Barcelona, Spain

Dogan, C:
 Hop Henri Mondor, Ctr Reference Malad Neuromusculaires, Paris, France

el Sherif, R:
 Air Hosp, Neuromuscular & Neurogenet Unit, Cairo, Egypt

Fossati, B:
 IRCCS Policlin San Donato, UO Neurol & Stroke Unit, Milan, Italy

Hilbert, J:
 Univ Rochester, Med Ctr, Dept Neurol, Rochester, NY USA

Kastreva, K:
 Med Univ, Dept Neurol, Alexandrovska Univ Hosp, Sofia, Bulgaria

Kimura, E:
 Natl Ctr Neurol & Psychiat, Dept Promoting Clin Trial & Translat Med, Translat Med Ctr, Kodaira, Tokyo, Japan

Korngut, L:
 Univ Calgary, Calgary, AB, Canada

Kostera-Pruszczyk, A:
 Med Univ Warsaw, Dept Neurol, Warsaw, Poland

Lindberg, C:
 Univ Hosp Orebro, Orebro, Sweden

Mazanec, R:
 Univ Hosp Prague Motol, Prague, Czech Republic

 Charles Univ Prague, Prague, Czech Republic

Orlando, L:
 Muscular Dystrophy Assoc, Chicago, IL USA

Takahashi, MP:
 Osaka Univ, Dept Funct Diagnost Sci, Grad Sch Med, Suita, Osaka, Japan

Peric, S:
 Univ Belgrade, Sch Med, Neurol Clin, Belgrade, Serbia

Rakocevic-Stojanovic, V:
 Univ Belgrade, Sch Med, Neurol Clin, Belgrade, Serbia

Rodrigues, M:
 Auckland City Hosp, Neurol, Private Bag 92024, Auckland 1142, New Zealand

Roxburgh, R:
 Auckland City Hosp, Neurol, Private Bag 92024, Auckland 1142, New Zealand

Schoser, B:
 Friedrich Baur Inst, Dept Neurol, Klinikum Munchen, Munich, Germany

Segovia, S:
 Ctr Invest Biomed Red Enfermedades Raras CIBERER, Valencia, Spain

Shatillo, A:
 Ukraine Acad Med Sci, Inst Neurol, Psychiat & Narcol, Kharkov, Ukraine

van Engelen, B:
 Radboud Univ Nijmegen, Nijmegen Med Ctr, Nijmegen, Netherlands

Vohanka, S:
 Univ Hosp, Brno, Czech Republic

 Masaryk Univ Brno, Brno, Czech Republic

Lochmuller, H:
 Univ Freiburg, Med Ctr, Fac Med, Dept Neuropediat & Muscle Disorders, Freiburg, Germany

 BIST, Ctr Genom Regulat, CNAG, CRG, Barcelona, Spain