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Multicenter Study
. 2025 Feb;12(2):203-209.
doi: 10.1002/mdc3.14264. Epub 2024 Nov 18.

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

Philipp Mahlknecht #  1 , Simon Leiter #  1 , Corinne Horlings  1 , Katarína Schwarzová  1 , Iris Egner  1 , Heike Stockner  1 , Kathrin Marini  1 , Christoph Theyer  1 , Laura Zamarian  1 , Atbin Djamshidian  1 , Klaus Seppi  1 , Fernanda Farfan  2 , Alicia Garrido  2 , Soumyabrata Ghosh  3 , Rejko Krüger  3   4 , Deborah McIntyre  4 , Brit Mollenhauer  5   6 , Alastair Noyce  7 , Claire Pauly  3   4 , Daniel F Pilco-Janeta  2 , Kavita Rege  3 , Venkata P Satagopam  3 , Sebastian Schade  5 , Cristina Simonet  7 , Claudia Trenkwalder  5   8 , Werner Poewe  1 ; HeBA Consortium
Collaborators, Affiliations
Multicenter Study

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

Philipp Mahlknecht et al. Mov Disord Clin Pract. 2025 Feb.

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.

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References

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