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Collecting patient preference information using a Clinical Data Research Network: demonstrating feasibility with idiopathic pulmonary fibrosis

Purpose: Rare diseases present challenges for accessing patient populations to conduct surveys. Clinical Data Research Networks (CDRNs) offer an opportunity to overcome those challenges by providing infrastructure for accessing patients and sharing data. This study aims to demonstrate the feasibilit...

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Detalles Bibliográficos
Autores principales: Hollin, Ilene L, Dimmock, Anne EF, Bridges, John FP, Danoff, Sonye K, Bascom, Rebecca
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Dove 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6529600/
https://www.ncbi.nlm.nih.gov/pubmed/31190761
http://dx.doi.org/10.2147/PPA.S201632