Recruitment strategies in the PROMISE Registry: Evaluating institutional outreach, direct-to-patient marketing, and community engagement approaches in a decentralized germline genetic registry
Year: 2026
Type: article
Study design: Observational Study
Abstract: 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.
Authors: Channing J. Paller, Ken Freitas, Natalie Macario, Christina Tran, Kelly Faville, Kathy Wiedemer, Jenny Chiang, Justin Lorentz, Leonard J. Appleman, Andrew J. Armstrong, Pedro C. Barata, Hala T. Borno, Keith Crawford, Tiffani A. DeMarco, Robert Dreicer, Jo Ann B. Elrod, Sheryl Gabram, Christopher George, Elisabeth I. Heath, Arif Hussain, Maha H.A. Hussain, Jordan M. Neil, Shifeng Mao, Rana R. McKay, Alicia K. Morgans, Motolani E. Ogunsanya, Matthew Orton, Ted Ritchie, Biren Saraiya, Alexandra O. Sokolova, Russell Szmulewitz, Imani Fortt, Leezandra Ramos, Stormi Smith, Patrick Freeman, Amanda McMannis, Rebecca Green, Jacob Vinson, Heather H. Cheng
Institutions: Johns Hopkins University, Prostate Cancer Clinical Trials Consortium, Sunnybrook Health Science Centre, University of Pittsburgh, UPMC Hillman Cancer Center, Duke Cancer Institute, University Hospitals of Cleveland, University Hospitals Seidman Cancer Center, University of California, San Francisco, Inova Fairfax Hospital, University of Virginia Cancer Center, Seattle Cancer Care Alliance, Northwestern University, Robert H. Lurie Comprehensive Cancer Center of Northwestern University, Mayo Clinic, University of Maryland, Baltimore, University of Maryland Marlene and Stewart Greenebaum Comprehensive Cancer Center, OU Health Stephenson Cancer Center, University of Oklahoma Health Sciences Center, University of Oklahoma, Allegheny Health Network, University of California San Diego, Dana-Farber Cancer Institute, Indiana University Health, Rutgers, The State University of New Jersey, Rutgers Cancer Institute, OHSU Knight Cancer Institute, University of Chicago, University of Washington, Fred Hutch Cancer Center
Language: English
Topic: Ethics in Clinical Research
Field: Medicine
Domain: Health Sciences
Open Access status: gold
Estimated APC paid: $2,320
OpenAlex ID: W7171386925