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 |
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Number of pages | 7 |
Journal | Movement Disorders Clinical Practice |
Early online date | 18 Nov 2024 |
DOIs | |
Publication status | Published - 18 Nov 2024 |
Keywords
- autonomy
- ethical principle
- hyposmia
- neuroprotection
- return of results
- risk disclosure