Recruitment strategies in the PROMISE Registry: Evaluating institutional outreach, direct-to-patient marketing, and community engagement approaches in a decentralized germline genetic registry.
Обработка статьи · этапы, ошибки и управление
Ошибки и ограничения
История · было → стало
Состояние обновляется каждые 5 секунд, пока блок открыт. Процент показывается только там, где известен объём работы. Пауза останавливает продолжение этапа; текущий запрос к источнику может завершиться.
Paller Channing J, Freitas Ken, Macario Natalie, Tran Christina, Faville Kelly, Wiedemer Kathy, Chiang Jenny, Lorentz Justin, Appleman Leonard J, Armstrong Andrew J, Barata Pedro C, Borno Hala T, Crawford Keith, DeMarco Tiffani A, Dreicer Robert, Elrod Jo Ann B, Gabram Sheryl, George Christopher, Heath Elisabeth I, Hussain Arif, Hussain Maha H A, Neil Jordan M, Mao Shifeng, McKay Rana R, Morgans Alicia K, Ogunsanya Motolani E, Orton Matthew, Ritchie Ted, Saraiya Biren, Sokolova Alexandra O, Szmulewitz Russell, Fortt Imani, Ramos Leezandra, Smith Stormi, Freeman Patrick, McMannis Amanda, Green Rebecca, Vinson Jacob, Cheng Heather H
Аннотация
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.