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-JanetaKavita 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 journalArticleResearchpeer-review

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 languageEnglish
Number of pages7
JournalMovement Disorders Clinical Practice
Early online date18 Nov 2024
DOIs
Publication statusPublished - 18 Nov 2024

Keywords

  • autonomy
  • ethical principle
  • hyposmia
  • neuroprotection
  • return of results
  • risk disclosure

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