Recruitment strategies in the PROMISE Registry: Evaluating institutional outreach, direct-to-patient marketing, and community engagement approaches in a decentralized germline genetic registry.

PURPOSE: The PROMISE Registry is a U.S. decentralized, 20-year prospective prostate cancer germline genetic registry. Here, we examine the effectiveness of different recruitment strategies, including institutional partnerships, direct-to-patient marketing outreach, and community engagement grants (CEGs). METHODS: Recruitment efforts were categorized into: (1) Institutional outreach through physician referrals, (2) Direct-to-patient marketing outreach, through online vehicles, including a PROMISE website and sponsored content, webinars, media relations, and other efforts to drive traffic to this site. Events and conferences were used on a limited basis, and (3) CEGs supported local organizations in reaching disproportionately affected populations. Effectiveness of each category was assessed through enrollment data, demographic diversity, and overall cost. RESULTS: From May 2021 to December 2024, 5649 individuals enrolled. Marketing outreach ​accounted for 61% of enrollment compared to other outreach methods. Non-White and Hispanic individuals consisted of 9.4% and 2.3%, of all consented participants, respectively. Almost one-fifth (19%) of participants enrolled were estimated to face greater levels of disadvantage, as defined by the Area Deprivation Index (ADI). CONCLUSION: A multifaceted recruitment approach was key to exceeding recruitment goals. Online marketing and strategic partnerships with patient advocacy organizations were effective and impactful. Opportunities for future research may explore refinements in digital outreach and ways to overcome accessibility barriers to improve rates of engagement and proportional representation in clinical registries.

Duke Scholars

Author Andrew John Armstrong Medicine, Medical Oncology