Article
Rare disease patient matchmaking: development and outcomes of an internet case-finding strategy in the Undiagnosed Diseases Network.
Orphanet journal of rare diseases - 10 May 2021
LeBlanc Kimberly, Glanton Emily, Nagy Anna, Bater Jorick, Berro Tala, McGuinness Molly A, Studwell Courtney, Might Matthew
Abstract excerpt
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 with increased matching within a rare disease population. METHODS: Public web pages were created for consented...
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