Objective: Research advancements enable earlier identification of neurodegenerative disease risk via prodromal symptoms and genetic and biomarker testing. Those in the “space between” risk and formal diagnosis may miss opportunities to adopt neuroprotective lifestyle modifications. The Proactive Brain Health Alliance (PBHA) provides credible health education, evidence-based interventions, and peer connection to individuals at risk for or living in the preclinical or prodromal stages of neurodegenerative disease.

Background: Launched in 2024 Q3, PBHA, a collaboration of Parkinson & Movement Disorder Alliance and CND Life Sciences, supports those at increased risk due to genetics, family history, alpha-synuclein biomarkers, or prodromal symptoms (iRBD, anosmia, constipation, mood disorders). The ethical implications of early risk identification (Schaeffer et al., 2020) highlight the need for follow-up education, psychosocial support, and self-advocacy opportunities.

Method: PBHA delivers expert-led education on risk factors, symptoms, neuroprotective lifestyle modifications, and research engagement. Past programs include:

Am I at Risk for PD?

Lifestyle Medicine

The Role of Genetics in PD

RBD: An Early Sign of PD?

Evaluating Environmental & Chemical Exposure in Movement Disorders

A discussion component allows participants to engage with neurologists, receive emotional support, reduce stigma, and foster self-efficacy.

Program evaluation includes polling and surveys to assess participant experiences, resource gaps, and knowledge gained.

Results: In a survey (n=11) of program participants,

80% expressed interest in clinical trials

80% stated they were not given actionable steps following diagnosis

80% indicated their mental health had been impacted by this knowledge

100% emphasized the need for a supportive space to mitigate isolation in the “space between” risk and diagnosis

Following two educational webinars, 87% (n=63) of respondents gained applicable knowledge and 70% (n=63) planned to modify their lifestyle accordingly.

Conclusion: Early identification of neurodegenerative risk poses challenges for providers due to lack of resources for this cohort but presents an opportunity to promote lifestyle modifications and trial participation. PBHA highlights the motivation of at-risk individuals to be proactive and the need to expand resources to reduce early risk identification burdens.

References: Keavney JL, Mathur S, Schroeder K, Merrell R, Castillo-Torres SA, Gao V, Crotty GF, Schwarzschild MA, Poma JM. Perspectives of People At-Risk on Parkinson’s Prevention Research. J Parkinsons Dis. 2024;14(3):399-414. doi: 10.3233/JPD-230436. PMID: 38489198; PMCID: PMC11091608. 

Schaeffer E, Rogge A, Nieding K, Helmker V, Letsch C, Hauptmann B, Berg D. Patients’ views on the ethical challenges of early Parkinson disease detection. Neurology. 2020 May 12;94(19):e2037-e2044. doi: 10.1212/WNL.0000000000009400. Epub 2020 Apr 14. PMID: 32291296.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/proactive-brain-health-alliance-serving-those-at-risk-for-neurodegenerative-disease/