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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Bibliographic Details
Published in:Orphanet J Rare Dis
Main Authors: LeBlanc, Kimberly, Glanton, Emily, Nagy, Anna, Bater, Jorick, Berro, Tala, McGuinness, Molly A., Studwell, Courtney, Might, Matthew
Format: Artigo
Language:Inglês
Published: BioMed Central 2021
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Research
Online Access: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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