Preferences regarding Disclosure of Risk for Parkinson's Disease in a Population-based Study

Philipp Mahlknecht; Simon Leiter; Corinne Horlings; Katarína Schwarzová; Iris Egner; Heike Stockner; Kathrin Marini; Christoph Theyer; Laura Zamarian; Atbin Djamshidian; Klaus Seppi; Fernanda Farfan; Alicia Garrido; Soumyabrata Ghosh; Rejko Krüger; Deborah McIntyre; Brit Mollenhauer; Alastair Noyce; Claire Pauly; Daniel F. Pilco-Janeta; Kavita Rege; Venkata P. Satagopam; Sebastian Schade; Cristina Simonet; Claudia Trenkwalder; Werner Poewe; Gregor Bletzacher; Atbin Djamshidian; Hannah Egger; Iris Egner; Fernanda Farfan; Tobias Fischnaller; Alicia Garrido; Lena Gatterer; Soumyabrata Ghosh; Valentin Groues; Somaye Hajian-Tilaki; Horst Hakelberg; Beatrice Heim; Sahra Henze; Corinne Horlings; Sonja Jonsdottir; Florian Krismer; Rejko Krüger; Elisabeth Lang; Tainá M. Marques; Deborah Mcintyre; Ulf Nehrbass; Olena Tsurkalenko; Carlos Vega; the HeBA Consortium

doi:10.1002/mdc3.14264

Preferences regarding Disclosure of Risk for Parkinson's Disease in a Population-based Study

Philipp Mahlknecht^*
, Simon Leiter
, Corinne Horlings
, Katarína Schwarzová
, Iris Egner
, Heike Stockner
, Kathrin Marini
, Christoph Theyer
, Laura Zamarian
, Atbin Djamshidian
, Klaus Seppi
, Fernanda Farfan
, Alicia Garrido
, Soumyabrata Ghosh
, Rejko Krüger
, Deborah McIntyre
, Brit Mollenhauer
, Alastair Noyce
, Claire Pauly
, Daniel F. Pilco-Janeta

Kavita Rege, Venkata P. Satagopam, Sebastian Schade, Cristina Simonet, Claudia Trenkwalder, Werner Poewe^*, Gregor Bletzacher, Atbin Djamshidian, Hannah Egger, Iris Egner, Fernanda Farfan, Tobias Fischnaller, Alicia Garrido, Lena Gatterer, Soumyabrata Ghosh, Valentin Groues, Somaye Hajian-Tilaki, Horst Hakelberg, Beatrice Heim, Sahra Henze, Corinne Horlings, Sonja Jonsdottir, Florian Krismer, Rejko Krüger, Elisabeth Lang, Tainá M. Marques, Deborah Mcintyre, Ulf Nehrbass, Olena Tsurkalenko, Carlos Vega, the HeBA Consortium

^*Corresponding author for this work

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

3 Citations (Scopus)

Abstract

Background: Preferences for risk disclosure in population-based studies assessing Parkinson's disease (PD) risk have not been assessed so far. Objectives: To examine preferences for risk disclosure in a subset of the European Healthy Brain Aging (HeBA) multicenter study. Methods: After a remote PD risk assessment, a structured pilot-questionnaire on risk disclosure was first presented to participants (≥50 years, without neurodegenerative diseases) during in-person visits at the Innsbruck study site. Results: From the included 81 participants (63% females, median age 65 years), 79% expressed an unconditional desire to be informed about their PD risk. Confronted with a hypothetical scenario of a positive, specific PD test, most would try to live a healthier lifestyle. Regarding future placebo-controlled disease-modification trials, 66% stated they would probably or definitely participate. Conclusions: This pilot-study shows an open-minded view of participants towards disclosure of risk for future PD and a proactive attitude regarding dealing with one's risk.

Original language	English
Pages (from-to)	203-209
Number of pages	7
Journal	Movement Disorders Clinical Practice
Volume	12
Issue number	2
Early online date	18 Nov 2024
DOIs	https://doi.org/10.1002/mdc3.14264
Publication status	Published - 18 Nov 2024

Keywords

autonomy
ethical principle
hyposmia
neuroprotection
return of results
risk disclosure

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Mahlknecht, P., Leiter, S., Horlings, C., Schwarzová, K., Egner, I., Stockner, H., Marini, K., Theyer, C., Zamarian, L., Djamshidian, A., Seppi, K., Farfan, F., Garrido, A., Ghosh, S., Krüger, R., McIntyre, D., Mollenhauer, B., Noyce, A., Pauly, C., ... the HeBA Consortium (2024). Preferences regarding Disclosure of Risk for Parkinson's Disease in a Population-based Study. Movement Disorders Clinical Practice, 12(2), 203-209. https://doi.org/10.1002/mdc3.14264

@article{a453148c10de4e21bcada461eaeeb1ee,

title = "Preferences regarding Disclosure of Risk for Parkinson's Disease in a Population-based Study",

abstract = "Background: Preferences for risk disclosure in population-based studies assessing Parkinson's disease (PD) risk have not been assessed so far. Objectives: To examine preferences for risk disclosure in a subset of the European Healthy Brain Aging (HeBA) multicenter study. Methods: After a remote PD risk assessment, a structured pilot-questionnaire on risk disclosure was first presented to participants (≥50 years, without neurodegenerative diseases) during in-person visits at the Innsbruck study site. Results: From the included 81 participants (63\% females, median age 65 years), 79\% expressed an unconditional desire to be informed about their PD risk. Confronted with a hypothetical scenario of a positive, specific PD test, most would try to live a healthier lifestyle. Regarding future placebo-controlled disease-modification trials, 66\% stated they would probably or definitely participate. Conclusions: This pilot-study shows an open-minded view of participants towards disclosure of risk for future PD and a proactive attitude regarding dealing with one's risk.",

keywords = "autonomy, ethical principle, hyposmia, neuroprotection, return of results, risk disclosure",

author = "Philipp Mahlknecht and Simon Leiter and Corinne Horlings and Katar{\'i}na Schwarzov{\'a} and Iris Egner and Heike Stockner and Kathrin Marini and Christoph Theyer and Laura Zamarian and Atbin Djamshidian and Klaus Seppi and Fernanda Farfan and Alicia Garrido and Soumyabrata Ghosh and Rejko Kr{\"u}ger and Deborah McIntyre and Brit Mollenhauer and Alastair Noyce and Claire Pauly and Pilco-Janeta, \{Daniel F.\} and Kavita Rege and Satagopam, \{Venkata P.\} and Sebastian Schade and Cristina Simonet and Claudia Trenkwalder and Werner Poewe and Gregor Bletzacher and Atbin Djamshidian and Hannah Egger and Iris Egner and Fernanda Farfan and Tobias Fischnaller and Alicia Garrido and Lena Gatterer and Soumyabrata Ghosh and Valentin Groues and Somaye Hajian-Tilaki and Horst Hakelberg and Beatrice Heim and Sahra Henze and Corinne Horlings and Sonja Jonsdottir and Florian Krismer and Rejko Kr{\"u}ger and Elisabeth Lang and Marques, \{Tain{\'a} M.\} and Deborah Mcintyre and Ulf Nehrbass and Olena Tsurkalenko and Carlos Vega and \{the HeBA Consortium\}",

note = "Funding: The HeBA study is supported by a grant from the Micheal J. Fox Foundation (MJFF; grant number MJFF-022057). Publisher Copyright: {\textcopyright} 2024 The Author(s). Movement Disorders Clinical Practice published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.",

year = "2024",

month = nov,

day = "18",

doi = "10.1002/mdc3.14264",

language = "English",

volume = "12",

pages = "203--209",

journal = "Movement Disorders Clinical Practice",

issn = "2330-1619",

publisher = "John Wiley and Sons Ltd",

number = "2",

}

Mahlknecht, P, Leiter, S, Horlings, C, Schwarzová, K, Egner, I, Stockner, H, Marini, K, Theyer, C, Zamarian, L, Djamshidian, A, Seppi, K, Farfan, F, Garrido, A, Ghosh, S, Krüger, R, McIntyre, D, Mollenhauer, B, Noyce, A, Pauly, C, Pilco-Janeta, DF, Rege, K, Satagopam, VP, Schade, S, Simonet, C, Trenkwalder, C, Poewe, W, Bletzacher, G, Djamshidian, A, Egger, H, Egner, I, Farfan, F, Fischnaller, T, Garrido, A, Gatterer, L, Ghosh, S, Groues, V, Hajian-Tilaki, S, Hakelberg, H, Heim, B, Henze, S, Horlings, C, Jonsdottir, S, Krismer, F, Krüger, R, Lang, E, Marques, TM, Mcintyre, D, Nehrbass, U, Tsurkalenko, O, Vega, C & the HeBA Consortium 2024, 'Preferences regarding Disclosure of Risk for Parkinson's Disease in a Population-based Study', Movement Disorders Clinical Practice, vol. 12, no. 2, pp. 203-209. https://doi.org/10.1002/mdc3.14264

TY - JOUR

T1 - Preferences regarding Disclosure of Risk for Parkinson's Disease in a Population-based Study

AU - Mahlknecht, Philipp

AU - Leiter, Simon

AU - Horlings, Corinne

AU - Schwarzová, Katarína

AU - Egner, Iris

AU - Stockner, Heike

AU - Marini, Kathrin

AU - Theyer, Christoph

AU - Zamarian, Laura

AU - Djamshidian, Atbin

AU - Seppi, Klaus

AU - Farfan, Fernanda

AU - Garrido, Alicia

AU - Ghosh, Soumyabrata

AU - Krüger, Rejko

AU - McIntyre, Deborah

AU - Mollenhauer, Brit

AU - Noyce, Alastair

AU - Pauly, Claire

AU - Pilco-Janeta, Daniel F.

AU - Rege, Kavita

AU - Satagopam, Venkata P.

AU - Schade, Sebastian

AU - Simonet, Cristina

AU - Trenkwalder, Claudia

AU - Poewe, Werner

AU - Bletzacher, Gregor

AU - Djamshidian, Atbin

AU - Egger, Hannah

AU - Egner, Iris

AU - Farfan, Fernanda

AU - Fischnaller, Tobias

AU - Garrido, Alicia

AU - Gatterer, Lena

AU - Ghosh, Soumyabrata

AU - Groues, Valentin

AU - Hajian-Tilaki, Somaye

AU - Hakelberg, Horst

AU - Heim, Beatrice

AU - Henze, Sahra

AU - Horlings, Corinne

AU - Jonsdottir, Sonja

AU - Krismer, Florian

AU - Krüger, Rejko

AU - Lang, Elisabeth

AU - Marques, Tainá M.

AU - Mcintyre, Deborah

AU - Nehrbass, Ulf

AU - Tsurkalenko, Olena

AU - Vega, Carlos

AU - the HeBA Consortium

N1 - Funding: The HeBA study is supported by a grant from the Micheal J. Fox Foundation (MJFF; grant number MJFF-022057). Publisher Copyright: © 2024 The Author(s). Movement Disorders Clinical Practice published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.

PY - 2024/11/18

Y1 - 2024/11/18

N2 - Background: Preferences for risk disclosure in population-based studies assessing Parkinson's disease (PD) risk have not been assessed so far. Objectives: To examine preferences for risk disclosure in a subset of the European Healthy Brain Aging (HeBA) multicenter study. Methods: After a remote PD risk assessment, a structured pilot-questionnaire on risk disclosure was first presented to participants (≥50 years, without neurodegenerative diseases) during in-person visits at the Innsbruck study site. Results: From the included 81 participants (63% females, median age 65 years), 79% expressed an unconditional desire to be informed about their PD risk. Confronted with a hypothetical scenario of a positive, specific PD test, most would try to live a healthier lifestyle. Regarding future placebo-controlled disease-modification trials, 66% stated they would probably or definitely participate. Conclusions: This pilot-study shows an open-minded view of participants towards disclosure of risk for future PD and a proactive attitude regarding dealing with one's risk.

AB - Background: Preferences for risk disclosure in population-based studies assessing Parkinson's disease (PD) risk have not been assessed so far. Objectives: To examine preferences for risk disclosure in a subset of the European Healthy Brain Aging (HeBA) multicenter study. Methods: After a remote PD risk assessment, a structured pilot-questionnaire on risk disclosure was first presented to participants (≥50 years, without neurodegenerative diseases) during in-person visits at the Innsbruck study site. Results: From the included 81 participants (63% females, median age 65 years), 79% expressed an unconditional desire to be informed about their PD risk. Confronted with a hypothetical scenario of a positive, specific PD test, most would try to live a healthier lifestyle. Regarding future placebo-controlled disease-modification trials, 66% stated they would probably or definitely participate. Conclusions: This pilot-study shows an open-minded view of participants towards disclosure of risk for future PD and a proactive attitude regarding dealing with one's risk.

KW - autonomy

KW - ethical principle

KW - hyposmia

KW - neuroprotection

KW - return of results

KW - risk disclosure

UR - https://www.scopus.com/pages/publications/85209992998

UR - https://pubmed.ncbi.nlm.nih.gov/39558636/

U2 - 10.1002/mdc3.14264

DO - 10.1002/mdc3.14264

M3 - Article

C2 - 39558636

AN - SCOPUS:85209992998

SN - 2330-1619

VL - 12

SP - 203

EP - 209

JO - Movement Disorders Clinical Practice

JF - Movement Disorders Clinical Practice

IS - 2

ER -

Preferences regarding Disclosure of Risk for Parkinson's Disease in a Population-based Study

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Keywords

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