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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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Dades bibliogràfiques
Publicat a:Orphanet J Rare Dis
Autors principals: LeBlanc, Kimberly, Glanton, Emily, Nagy, Anna, Bater, Jorick, Berro, Tala, McGuinness, Molly A., Studwell, Courtney, Might, Matthew
Format: Artigo
Idioma:Inglês
Publicat: BioMed Central 2021
Matèries:
Accés en línia: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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