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...

詳細記述

書誌詳細

出版年:	Orphanet Journal of Rare Diseases
主要な著者:	Kimberly LeBlanc, Emily Glanton, Anna Nagy, Jorick Bater, Tala Berro, Molly A. McGuinness, Courtney Studwell, Undiagnosed Diseases Network, Matthew Might
フォーマット:	論文
言語:	英語
出版事項:	BMC 2021-05-01
主題:	Rare disease Gene discovery Matchmaking Data sharing Diagnostic odyssey
オンライン･アクセス:	https://doi.org/10.1186/s13023-021-01825-1