If you build a rare disease registry, will they enroll and will they use it? Methods and data from the National Registry of Myotonic Dystrophy (DM) and Facioscapulohumeral Muscular Dystrophy (FSHD)

INTRODUCTION: Registries are becoming increasingly important for rare diseases as experimental therapies develop. This report describes the methodology behind the National Registry of Myotonic Dystrophy (DM) and Facioscapulohumeral Muscular Dystrophy (FSHD) Patients and Family Members to facilitate...

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Detalhes bibliográficos
Main Authors: Hilbert, James E., Kissel, John T., Luebbe, Elizabeth A., Martens, William B., McDermott, Michael P., Sanders, Donald B., Tawil, Rabi, Thornton, Charles A., Moxley, Richard T.
Formato: Artigo
Idioma:Inglês
Publicado em: 2011
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Article
Acesso em linha:https://ncbi.nlm.nih.gov/pmc/articles/PMC3357007/
https://ncbi.nlm.nih.gov/pubmed/22155025
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1016/j.cct.2011.11.016
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