Objective: Describe recruitment tactics for engaging community in Parkinson’s disease remote risk screening

Background: Early clinical markers of PD are critical to identifying biomarker signatures before typical PD symptoms occur. Studies including the Parkinson’s Progression Markers Initiative (PPMI) have identified smell loss (hyposmia) as a screening tool for disease risk. In mid-2022, PPMI launched the Smell Test Direct system to remotely screen for smell loss in individuals aged 60 and older without PD. Participants consent and enter contact information online, are mailed a 40-question scratch-and-sniff smell test and enter answers in a web-based portal. PPMI invites select individuals for additional screening at a clinical site; some will be invited to enroll for longitudinal assessment.

Method: To engage a broad population of people without a Parkinson’s diagnosis, PPMI and sponsor The Michael J. Fox Foundation (MJFF) have engaged in a multi-faceted recruitment approach. Recruitment is ongoing in the U.S. and Canada and will soon begin in England and the Netherlands.

Results: Smell Test Direct has seen nearly 120,000 unique website visitors, 18,000+ consented and 1,200+ hyposmics identified. MJFF marketing efforts have yielded 74.05% (13,855) of all consents with paid media — online ads, promoted web search results, social media ads — generating most activity. Referrals from the MJFF website and emails to the MJFF community also contribute heavily. A partnership to email a clinical laboratory’s (Quest Diagnostics) established cohort that opted in to learn about research opportunities led to 4.8% (898) of consents. Ambassador outreach — equipping people with Parkinson’s and supporters with promotion materials — accounted for 3.72% (696) of consents. Other sources included direct mail to aged individuals, outreach in active aging residential communities, newspaper ads, and flyers and events at PPMI clinical sites. All sources yielded similar hyposmic results (average 7.46% of consented individuals).

Conclusion: Broad outreach is a leading source for engaging a community of potentially at-risk individuals. Referral partnerships with health care organizations are a promising option. Ambassador outreach is an important pillar of recruitment both for direct referrals and for strengthening collaboration toward shared goals.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/recruiting-for-parkinsons-disease-risk-successful-engagement-tactics-to-screen-for-hyposmia-in-undiagnosed-individuals/