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
{"title":"Return of individual research results to participants with and at risk for Parkinson's disease.","authors":"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","doi":"10.1017/cts.2024.616","DOIUrl":null,"url":null,"abstract":"<p><p>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 (<i>n</i> = 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.</p>","PeriodicalId":15529,"journal":{"name":"Journal of Clinical and Translational Science","volume":"8 1","pages":"e164"},"PeriodicalIF":2.1000,"publicationDate":"2024-10-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11604507/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Clinical and Translational Science","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1017/cts.2024.616","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2024/1/1 0:00:00","PubModel":"eCollection","JCR":"Q3","JCRName":"MEDICINE, RESEARCH & EXPERIMENTAL","Score":null,"Total":0}
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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 (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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