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Preferences regarding Disclosure of Risk for Parkinson's Disease in a Population-based Study
Philipp Mahlknecht1, Simon Leiter1, Corinne Horlings1
1Department of Neurology, Medical University of Innsbruck, Innsbruck, Austria.
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.
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