Objective: We aim to understand the motivation of participants to join the first online-phase of the European multicenter Healthy Brain Ageing (HeBA; see Abstract 0748_1125_001612) Study comprising of the four centres Paracelsus-Elena-Klinik Kassel (PEKK) in Germany, Medical University Innsbruck (MUI) in Austria, Hospital Clinic Barcelona (HCB) in Spain, and the National Centre of Excellence in Research on PD in Luxembourg (NCER-PD).

Background: Symptoms of neurodegenerative diseases such as anxiety, depression, sleep disturbances, constipation, or olfactory deficits may occur years to decades before the defining symptoms of Parkinson disease (PD) become apparent. HeBA aims to collect information on risk and prodromal factors in a large European cohort in an attempt to identify risk individuals for developing PD (see abstract 0748_1125_001612). Understanding participants’ reasons and motivation for participation may enhance recruitment and retention rates in HeBA and similar studies.

Method: Open communication and advertisement through various channels was launched in the regions of Innsbruck, Barcelona, and Luxembourg to invite people over 50 years of age without any known neurodegenerative disease to participate in an online survey. In addition to questions related to risk and prodromal markers, participants were asked how they became aware of the study and what their motivation to participate was through a custom-made, semi-structured questionnaire.

Results: While recruitment is still going on, in an interim analysis with ~1580 valid answers reasons for participation were as follows (multiple answers possible): ‘A loved one (friend or relative) has PD or dementia’ in 36%; ‘I am concerned that I may develop one of these diseases in the future’ in 42%; ‘I am just curious about what this study is all about’ in 23%; ‘I would like to support research into these diseases’ in 73%; ‘I have a professional interest in this area’ in 8%; and other reasons in 2%.

Conclusion: Motivation for most participants were friends or relatives with PD or dementia, fear to develop disease, and the will to support research into the area. Updated, more detailed analyses in higher number of participants will be presented at the MDS conference.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/from-the-healthy-brain-ageing-heba-cohort-motivation-for-participating-in-the-first-online-phase-of-heba/