KEY TAKEAWAYS
- The study aimed to create a PCa genetic registry by enrolling and screening 5,000 PCa pts.
- The study used various outreach methods, including direct-to-patient, online, and in-person activities, to reach potential participants.
- The study found that direct-to-patient outreach and partnerships can increase enrollment in genetic registries, but increasing diversity remains challenging.
New genetic testing guidelines and treatments for prostate cancer (PCa) highlight the need for registries to identify patients(pts) for novel therapies and track their outcomes. PROMISE is a nationwide registry using outreach to recruit ps beyond academic medical centers.
Researchers aimed to create a PCa genetic registry by enrolling and screening 5,000 PCa pts.
The outreach program, launched in May 2021 with enrollment, primarily aims to enhance recruitment efforts at 23 institutions. They sought to expand enrollment to include populations and regions not typically served by academic medical centers. To achieve this, a significant focus has been placed on direct-to-patient outreach, which involves partnering with prostate cancer advocacy organizations in areas with a high disease prevalence. Online activities encompass webinars, interviews, podcasts, articles, partner email campaigns, and newsletters. In-person initiatives involved setting up information booths, giving presentations at conferences attended by pts and healthcare providers, and participating in patient walks. Letters introducing the PROMISE program were sent to PCa pts through the Maryland Cancer Registry. A dedicated team comprising marketing, partnerships, engagement, and website SEO specialists supports this program.
The study enrollment is 54% ahead of the initial projections, with 2,178 pts enrolled. Of these, 219 were eligible for long-term follow-up, spread across 48 states, with the majority of enrollment on the East and West coasts. The distribution of race and ethnicity were American Indian or Alaska Native (0.4%), Asian (2.0%), Black (3.9%), Hispanic (1.8%), Native Hawaiian or Pacific Islander (0.1%), White (76.4%), unknown (0.4%), and no response provided (16.3%).
The study found that Direct-to-patient outreach and partnerships can increase enrollment in genetic registries, but increasing diversity remains challenging.
Source: https://ascopubs.org/doi/abs/10.1200/JCO.2023.41.16_suppl.10628
Clinical Trial: https://www.clinicaltrials.gov/study/NCT04995198
Channing Judith Paller, Justin Lorentz, Leonard Joseph Appleman, Andrew J. Armstrong, Pedro C. Barata, Robert Dreicer, Jo Ann Elrod, Mark T. Fleming, Christopher M. George, Elisabeth I. Heath, Maha H. A. Hussain, Shifeng S. Mao, Rana R. McKay, Alicia K. Morgans, Matthew Orton, Roberto Pili, Biren Saraiya, Alexandra Sokolova, Walter Michael Stadler, Heather H. Cheng, and PROMISE Trial Investigators. DOI: 10.1200/JCO.2023.41.16_suppl.10628 Journal of Clinical Oncology 41, no. 16_suppl (June 01, 2023) 10628-10628.
