Objective: Describe a three-tiered initiative to recruit Lewy Body Dementia (LBD) family caregivers into a national randomized controlled trial (PERSEVERE, NCT06389032).

Background: LBD is often a missed or delayed diagnosis, even among those diagnosed with Parkinson’s Disease (PD), with LBD family caregivers facing high strain. Studies in LBD frequently face under-enrollment and homogeneous cohorts, with male, non-Caucasian, and rural-dwelling LBD caregivers largely absent. To address these challenges, we partnered with foundations and LBD caregivers on a multipronged recruitment strategy for a national, virtual trial of an LBD caregiver intervention.

Method: We designed a three-tiered approach to recruit 622 LBD family caregivers over two years. Partnering with the Parkinson’s Foundation and Lewy Body Dementia Association, a top-down approach was used to reach a broad PD and LBD audience through mass emails, helpline referrals, social media posts, and community events. We took a grassroots approach via individual clinician referrals for caregivers who may not have yet connected with national organizations. Finally, our LBD caregiver advisors recommended networks, resources, and organizations serving regional PD/LBD communities. We created a suite of educational talks and offered these along with a suite of digital and print recruitment materials and social media posts to interested organizations, support groups, and community events. Community partners and caregivers ensured content and visuals were representative, applicable, and appealing. Demographics and referral source are collected upon enrollment, which is ongoing.

Results: In the first ten months of enrollment, we have screened 750 individuals and enrolled 350, excluding 31 withdrawn. Referral sources: national organizations (62.8%); support groups (19.5%); word-of-mouth (8.1%); referring provider (8.5%); clinical trial websites (2.8%). Among enrolled participants, 10.6% are male, 9.4% non-Caucasian, and 9.1% rural-dwelling.

Conclusion: A multipronged, community-engaged approach to LBD caregiver recruitment with early and longitudinal partnership with advocacy organizations and experienced caregivers has exceeded anticipated enrollment, particularly from regional support groups and peer referrals. Adopting community-engaged approaches may facilitate both study enrollment and generalizability of findings in more representative populations.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/multipronged-community-engaged-approach-to-recruiting-lewy-body-dementia-family-caregivers-for-a-national-trial/