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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Detaylı Bibliyografya
Yayımlandı:Orphanet J Rare Dis
Asıl Yazarlar: LeBlanc, Kimberly, Glanton, Emily, Nagy, Anna, Bater, Jorick, Berro, Tala, McGuinness, Molly A., Studwell, Courtney, Might, Matthew
Materyal Türü: Artigo
Dil:Inglês
Baskı/Yayın Bilgisi: BioMed Central 2021
Konular:
Research
Online Erişim: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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