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向患有帕金森病和有患帕金森病风险的参与者反馈个人研究结果。

Return of individual research results to participants with and at risk for Parkinson's disease.

作者信息

Lettenberger Samantha E, Hartman Emily A, Tam Kali, Auinger Peggy, Pawlik Meghan E, Wilson Renee, Banda Elizabeth T, Valdovinos Blanca, Kinel Daniel, Alcalay Roy N, Dorsey E Ray, Norcliffe-Kaufmann Lucy, Sharma Saloni, Holloway Robert G, Schneider Ruth B

机构信息

Center for Health + Technology, University of Rochester Medical Center, Rochester, NY, USA.

University of Rochester, Rochester, NY, USA.

出版信息

J Clin Transl Sci. 2024 Oct 15;8(1):e164. doi: 10.1017/cts.2024.616. eCollection 2024.

Abstract

In a prospective, remote natural history study of 277 individuals with (60) and genetically at risk for (217) Parkinson's disease (PD), we examined interest in the return of individual research results (IRRs) and compared characteristics of those who opted for versus against the return of IRRs. Most ( = 180, 65%) requested sharing of IRRs with either a primary care provider, neurologist, or themselves. Among individuals without PD, those who requested sharing of IRRs with a clinician reported more motor symptoms than those who did not request any sharing (mean (SD) 2.2 (4.0) versus 0.7 (1.5)). Participant interest in the return of IRRs is strong.

摘要

在一项针对277名患有帕金森病(PD)(60例)及有遗传风险(217例)的个体的前瞻性远程自然史研究中,我们调查了个体对返还研究结果(IRRs)的兴趣,并比较了选择和反对返还IRRs的人的特征。大多数人(n = 180,65%)要求将IRRs与初级保健提供者、神经科医生或他们自己分享。在没有PD的个体中,那些要求与临床医生分享IRRs的人比那些不要求任何分享的人报告了更多的运动症状(平均值(标准差)2.2(4.0)对0.7(1.5))。参与者对返还IRRs的兴趣强烈。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a9bb/11604507/91284d559583/S2059866124006162_fig1.jpg

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