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Research in the literature shows that minority communities have a high willingness to participate in clinical trials and high self-reported general knowledge about the clinical research process. Yet, according to a recent study conducted by the Center for the Study of Drug Development at the Tufts University School of Medicine, minority patients – most notably those of Black and African descent – are highly underrepresented in clinical trials of new medical interventions. Tufts research also shows that patient referral rates into clinical trials among practicing minority physicians and nurses are very low.
To address the critical need to improve patient diversity in clinical trials, CISCRP – in partnership with ten leading pharmaceutical companies and clinical research service providers – has launched a new consortium that will focus energy and resources on community-based education during the next five years beginning in early 2020. Consortium members include Merck, IQVIA, Biogen, Otsuka, CSL Behring, Janssen, WCG, Boston Scientific, EMD Serono, and Pfizer. Representatives from each member company will participate on a steering committee and will provide staff and resources to support the planning and execution of live educational events in five targeted urban centers annually.
"This centralized approach is vital to bring together the necessary oversight and infrastructure required to engage with communities from around the country," said Jonathan Jackson, Ph.D., study volunteer and The Center Director of Community Access, Recruitment, and Engagement (CARE) Research Center at the Massachusetts General Hospital, Harvard Medical School.
The Consortium initiative builds on CISCRP's 18-year experience producing and hosting internationally recognized live educational events – called AWARE-for-ALL programs -- throughout the United States and parts of Europe. Each event engages a local planning committee comprised of members of the public, patients, advocacy groups, health care and clinical research professionals, offers educational presentations and discussions, as well as free health screenings and information about local clinical trial activity. The consortium also plans to mobilize a pop-up educational exhibit in targeted urban health centers to generate excitement and awareness in the weeks leading up to each live event.
"We are thrilled to be working with Consortium members on this important and novel initiative," said Ellyn Getz, Associate Director of Development & Community Engagement at CISCRP. "Support, input and insight from consortium members presents an unprecedented opportunity to have an even greater impact on advancing public and patient clinical research literacy over a 5-year time period with ongoing continuous improvement," she added.
The Center for Information and Study on Clinical Research Participation (CISCRP) is an internationally recognized 501(c)(3) non-profit organization dedicated to educating, informing and engaging the public and patients about clinical research. CISCRP is committed to providing services designed to help professionals best engage patients as partners in the clinical research process. Visit https://www.CISCRP.org.
Joan A. Chambers
Senior Director, Marketing & Outreach
Phone: 617-725-2750 ext. 202