将个人研究结果反馈给患有或有患帕金森病风险的参与者。

IF 2.1 Q3 MEDICINE, RESEARCH & EXPERIMENTAL

Journal of Clinical and Translational Science Pub Date : 2024-10-15 eCollection Date: 2024-01-01 DOI:10.1017/cts.2024.616

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

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引用次数: 0

摘要

在一项前瞻性、远程自然历史研究中，我们对277例（60例）和（217例）帕金森病（PD）遗传风险个体进行了研究，考察了对个人研究结果（IRRs）回报的兴趣，并比较了那些选择和不选择IRRs回报的个体的特征。大多数（n = 180,65%）要求与初级保健提供者、神经科医生或他们自己分享IRRs。在没有PD的个体中，那些要求与临床医生分享IRRs的人比那些没有要求分享IRRs的人报告了更多的运动症状（平均（SD） 2.2（4.0）对0.7(1.5)）。参与者对内部回报率的兴趣很强。

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

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 (n = 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.

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