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Methodology of clinical research in rare diseases: development of a research program in juvenile neuronal ceroid lipofuscinosis (JNCL) via creation of a patient registry and collaboration with patient advocates.
de Blieck, Elisabeth A; Augustine, Erika F; Marshall, Frederick J; Adams, Heather; Cialone, Jennifer; Dure, Leon; Kwon, Jennifer M; Newhouse, Nicole; Rose, Katherine; Rothberg, Paul G; Vierhile, Amy; Mink, Jonathan W.
Affiliation
  • de Blieck EA; University of Rochester, Rochester, NY 14642, USA. lisa.deblieck@chet.rochester.edu
Contemp Clin Trials ; 35(2): 48-54, 2013 Jul.
Article in En | MEDLINE | ID: mdl-23628560
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Full text: 1 Collection: 01-internacional Database: MEDLINE Main subject: Registries / Clinical Trials as Topic / Patient Selection / Rare Diseases / Biomedical Research / Neuronal Ceroid-Lipofuscinoses Limits: Humans Language: En Journal: Contemp Clin Trials Journal subject: MEDICINA / TERAPEUTICA Year: 2013 Document type: Article Affiliation country: Estados Unidos Country of publication: Estados Unidos
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Full text: 1 Collection: 01-internacional Database: MEDLINE Main subject: Registries / Clinical Trials as Topic / Patient Selection / Rare Diseases / Biomedical Research / Neuronal Ceroid-Lipofuscinoses Limits: Humans Language: En Journal: Contemp Clin Trials Journal subject: MEDICINA / TERAPEUTICA Year: 2013 Document type: Article Affiliation country: Estados Unidos Country of publication: Estados Unidos