J
Jorge Alberto Diaz Manera
Publications - 2
Citations - 32
Jorge Alberto Diaz Manera is an academic researcher. The author has contributed to research in topics: Myotonic dystrophy. The author has an hindex of 2, co-authored 2 publications receiving 10 citations.
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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.
Libby Wood,Guillaume Bassez,Corinne Bleyenheuft,Craig Campbell,Louise Cossette,Aura Cecilia Jimenez-Moreno,Yi Dai,Hugh Dawkins,Jorge Alberto Diaz Manera,Céline Dogan,Rasha El Sherif,Barbara Fossati,Caroline E Graham,James E. Hilbert,Kristinia Kastreva,En Kimura,Lawrence Korngut,Anna Kostera-Pruszczyk,Christopher Lindberg,Björn Lindvall,Elizabeth Luebbe,Anna Lusakowska,Radim Mazanec,Giovani Meola,Liannna Orlando,Masanori P. Takahashi,Stojan Peric,Jack Puymirat,Vidosava Rakocevic-Stojanovic,Miriam Rodrigues,Richard Roxburgh,Benedikt Schoser,Sonia Segovia,Andriy V. Shatillo,Simone Thiele,Ivailo Tournev,Baziel G.M. van Engelen,S. Vohanka,Hanns Lochmüller +38 more
TL;DR: Surveyed 22 registries collecting information on myotonic dystrophy patients to assess the proliferation and utility of the dataset agreed in 2009 and suggest how to maximise this collective resource in future therapeutic programmes.