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

Abstract 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 assoc...

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Bibliographic Details
Published in:Orphanet Journal of Rare Diseases
Main Authors: Kimberly LeBlanc, Emily Glanton, Anna Nagy, Jorick Bater, Tala Berro, Molly A. McGuinness, Courtney Studwell, Undiagnosed Diseases Network, Matthew Might
Format: Article
Language:English
Published: BMC 2021-05-01
Subjects:
Rare disease
Gene discovery
Matchmaking
Data sharing
Diagnostic odyssey
Online Access:https://doi.org/10.1186/s13023-021-01825-1

Internet

https://doi.org/10.1186/s13023-021-01825-1

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