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The TREAT-NMD Care and Trial Site Registry: an online registry to facilitate clinical research for neuromuscular diseases

Sunil Rodger, Hanns Lochmüller, Adrian Tassoni, Kathrin Gramsch, Kirsten König, Kate Bushby, Volker Straub, Rudolf Korinthenberg, Janbernd Kirschner

Orphanet Journal of Rare Diseases – October, 2013

The TREAT-NMD Duchenne muscular dystrophy registries: conception, design and utilisation by industry and academia

Catherine L. Bladen, Karen Rafferty, Volker Straub, Soledad Monges, Angélica Moresco, Hugh Dawkins, Anna Roy, Teodora Chamova, Velina Guergueltcheva, Lawrence Korngut, Craig Campbell, Yi Dai, Nina Barišić, Tea Kos, Petr Brabec, Jes Rahbek, Jaana Lahdetie, Sylvie Tuffery-Giraud, Mireille Claustres, France Leturcq, Rabah Ben Yaou, Maggie C. Walter, Olivia Schreiber, Veronika Karcagi, Agnes Herczegfalvi, Venkatarman Viswanathan, Farhad Bayat, Isis de la caridad Guerrero Sarmiento, Anna Ambrosini, Francesca Ceradini, En Kimura, Janneke C. van den Bergen, Miriam Rodrigues, Richard Roxburgh, Anna Lusakowska, Jorge Oliveira, Rosário Santos, Elena Neagu, Niculina Butoianu, Svetlana Artemieva, Vedrana Milic Rasic, Manuel Posada, Francesc Palau, Björn Lindvall, Clemens Bloetzer, Ayşe Karaduman, Haluk Topaloğlu, Serap Inal, Piraye Oflazer, Angela Stringer, Andriy V. Shatillo, Ann S. Martin, Holly Peay, Kevin M. Flanigan, David Salgado, Brigitta von Rekowski, Stephen Lynn, Emma Heslop, Sabina Gainotti, Domenica Taruscio, Jan Kirschner, Jan Verschuuren, Kate Bushby, Christophe Béroud, Hanns Lochmüller

Human Mutation 2013 – October, 2013

Mapping the differences in care for 5000 Spinal Muscular Atrophy patients, a survey of 24 national registries in North America, Australasia and Europe

Catherine L. Bladen, Rachel Thompson, Jacqueline M. Jackson, Connie Garland, Claire Wegel, Anna Ambrosini, Paolo Pisano, Maggie C. Walter, Olivia Schreiber, Anna Lusakowska, Maria Jedrzejowska, Anna Kostera-Pruszczyk, Ludo van der Pol, Renske I. Wadman, Ole Gredal, Ayse Karaduman, Haluk Topaloglu, Oznur Yilmaz, Vitaliy Matyushenko, Vedrana Milic Rasic, Ana Kosac, Veronika Karcagi, Marta Garami, Agnes Herczegfalvi, Soledad Monges, Angelica Moresco, Lilien Chertkoff, Teodora Chamova, Velina Guergueltcheva, Niculina Butoianu, Dana Craiu, Lawrence Korngut, Craig Campbell, Jana Haberlova, Jana Strenkova, Moises Alejandro, Alatorre Jimenez, Genaro Gabriel Ortiz, Gracia Viviana Gonzalez Enriquez, Miriam Rodrigues, Richard Roxburgh, Hugh Dawkins, Leanne Youngs, Jaana Lahdetie, Natalija Angelkova, Pascal Saugier-Veber, Jean-Marie Cuisset, Clemens Bloetzer, Pierre-Yves Jeannet, Andrea Klein, Andres Nascimento, Eduardo Tizzano, David Salgado, Eugenio Mercuri, Thomas Sejersen, Jan Kirschner, Karen Rafferty, Volker Straub, Kate Bushby, Jan Verschuuren, Christophe Beroud, Hanns Lochmüller

Journal of Neurology – January, 2014

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