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The Healthy Brain Ageing (HeBA) Parkinson’s disease risk survey: Study design and methods

C. Horlings, A. Garrido, C. Vega Moreno, S. Schade, T. Marques, P. Mahlknecht, C. Gomes, S. Ghosh, K. Rege, R. Rawal, C. Pauly, D. Mcintyre, K. Marini, K. Seppi, M. Marti, C. Trenkwalder, E. Tolosa, W. Poewe, V. Satagopam, R. Krüger, B. Mollenhauer (Innsbruck, Austria)

Meeting: 2023 International Congress

Abstract Number: 1957

Keywords: Parkinson’s

Category: Other

Objective: To present Healthy Brain Ageing (HeBA) – a European multi-centre population-based study on the prevalence and predictivity of risk factors for Parkinson´s Disease.

Background: The HeBA initiative formed by the Paracelsus-Elena-Klinik Kassel (PEKK), Medical University Innsbruck (MUI), Hospital Clinic Barcelona (HCB) and the National Centre of Excellence in Research on PD in Luxembourg (NCER-PD) sponsored by the Michael J Fox Foundation, aims to investigate cross-sectionally and longitudinally the risk factors for PD in a large cohort of healthy volunteers over 50 years of age.

Method: The study uses a top-down strategy to determine high-risk participants based on an online questionnaire on various risk and prodromal markers of PD (e.g. family history of PD, smell deficits, dream-enactment behaviors) using single high-interest questions (HIQ), validated questionnaires, and the University of Pennsylvania Smell Identification Test (UPSIT) completed by the participants at home. High-risk participants are identified by the post-test probability for prodromal PD as per MDS criteria, a positive answer to one or more of the HIQ, and/or hyposmia according to the UPSIT adjusted by sex and age. Participants are recruited by either a community-based (PEKK) approach, where citizens over 50 years old were invited personally by postal mail, or an advertising approach (MUI, HCB, NCER-PD) where newspaper, television, and social media channels are used to recruit participants. 

In a next step, high- and low-risk participants will be invited for in-person visits including a clinical examination, questionnaires, biosample collection, and for a subpopulation transcranial ultrasound of midbrain, dopamine transporter (DAT) imaging and brain MRI. Data is collected through an online RedCap database that is managed by the Luxembourg Centre for Systems Biomedicine (LCSB) University of Luxembourg.

Results: Up till now, 12962 volunteers have participated in the online questionnaire. The community-based approach recruited 8059 participants, the advertising approach 4898 participants.  3153 UPSITs have been collected so far (Ref Poster#2 for baseline data). The collection of clinical data through in-person visits has started recently.

Conclusion: The HeBA initiative represents the first European collaborative study for defining the prevalence of risk factors of PD in the general population and sets the ground for an early diagnosis of PD.

To cite this abstract in AMA style:

C. Horlings, A. Garrido, C. Vega Moreno, S. Schade, T. Marques, P. Mahlknecht, C. Gomes, S. Ghosh, K. Rege, R. Rawal, C. Pauly, D. Mcintyre, K. Marini, K. Seppi, M. Marti, C. Trenkwalder, E. Tolosa, W. Poewe, V. Satagopam, R. Krüger, B. Mollenhauer. The Healthy Brain Ageing (HeBA) Parkinson’s disease risk survey: Study design and methods [abstract]. Mov Disord. 2023; 38 (suppl 1). https://www.mdsabstracts.org/abstract/the-healthy-brain-ageing-heba-parkinsons-disease-risk-survey-study-design-and-methods/. Accessed June 14, 2025.
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