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Eight years after an international workshop on myotonic dystrophy patient registries: case study of a global collaboration for a rare disease.

Bjorn Lindvall; Elizabeth Luebbe; Anna Lusakowska; Radim Mazanec; Giovanni Meola; Lianna Orlando; Masanori P Takahashi; Stojan Peric; Jack Puymirat; Rakocevic-Stojanovic, Vidosava; Miriam Rodrigues; ...

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

Rasic,V.M.; Posada,M.; Palau,F.; Lindvall,B.; Bloetzer,C.; A.A. Karaduman; Topaloglu,H.; Inal,S.; Oflazer,P.; Stringer,A.; Shatillo,A.V.; A.S. Martin; H.L. Peay; Flanigan,K.M.; Salgado,D.; von Rekowski,B.; ...

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