Rare disease patient matchmaking: development and outcomes of an internet case-finding strategy in the Undiagnosed Diseases Network

BACKGROUND: Although clinician, researcher, and patient resources for matchmaking exist, finding similar patients remains an obstacle for rare disease diagnosis. The goals of this study were to develop and test the effectiveness of an Internet case-finding strategy and identify factors associated wi...

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Detalles Bibliográficos
Publicado en:Orphanet J Rare Dis
Main Authors: LeBlanc, Kimberly, Glanton, Emily, Nagy, Anna, Bater, Jorick, Berro, Tala, McGuinness, Molly A., Studwell, Courtney, Might, Matthew
Formato: Artigo
Idioma:Inglês
Publicado: BioMed Central 2021
Assuntos:
Research
Acceso en liña:https://ncbi.nlm.nih.gov/pmc/articles/PMC8108446/
https://ncbi.nlm.nih.gov/pubmed/33971915
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1186/s13023-021-01825-1
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