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

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

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

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^*

^*Corresponding author for this work

Research output: Contribution to journal › Article › peer-review

1 Scopus citations

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.

Original language	English
Article number	e164
Journal	Journal of Clinical and Translational Science
Volume	8
Issue number	1
DOIs	https://doi.org/10.1017/cts.2024.616
State	Published - 15 Oct 2024
Externally published	Yes

Keywords

Lrrk2
Parkinson's disease
research dissemination
research ethics
return of results
telemedicine

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10.1017/cts.2024.616

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Lettenberger, S. E., Hartman, E. A., Tam, K., Auinger, P., Pawlik, M. E., Wilson, R., Banda, E. T., Valdovinos, B., Kinel, D., Alcalay, R. N., Dorsey, E. R., Norcliffe-Kaufmann, L., Sharma, S., Holloway, R. G., & Schneider, R. B. (2024). Return of individual research results to participants with and at risk for Parkinson's disease. Journal of Clinical and Translational Science, 8(1), Article e164. https://doi.org/10.1017/cts.2024.616

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

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Lettenberger, SE, Hartman, EA, Tam, K, Auinger, P, Pawlik, ME, Wilson, R, Banda, ET, Valdovinos, B, Kinel, D, Alcalay, RN, Dorsey, ER, Norcliffe-Kaufmann, L, Sharma, S, Holloway, RG & Schneider, RB 2024, 'Return of individual research results to participants with and at risk for Parkinson's disease', Journal of Clinical and Translational Science, vol. 8, no. 1, e164. https://doi.org/10.1017/cts.2024.616

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AU - Kinel, Daniel

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AU - Dorsey, E. Ray

AU - Norcliffe-Kaufmann, Lucy

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

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