ROCKVILLE, Md. (September 10, 2019) – Because there is often a shortage in participation rates among ethnic and racial minorities in clinical trials, the American Kidney Fund (AKF) today announced a patient engagement program to help minority populations adequately consider whether clinical trials are appropriate for them and how to access trials.
Lack of minority patient engagement in clinical trials adds to the general recruitment challenges researchers routinely face and prevents them from acquiring data needed to make drugs that work best for minority patients — the very population that is often most affected by many chronic diseases, including kidney disease. For example, African Americans are three times more likely and Hispanics are 1.6 times more likely to develop kidney failure.
"Minorities make up less than 10% of patients enrolled in clinical trials," said LaVarne A. Burton, president and CEO of the American Kidney Fund. "While it's important to increase minority patient involvement in clinical trials, a key aspect of that is getting patients to understand they can and should play an active role in all aspects of research and be proactive participants in their own care."
Through a digital resource hub, with live and recorded webinars, AKF will address the reservations that chronic kidney disease patients may have about clinical trials, myths and misconceptions about how data gathered during the trial will be used, whether they will get the best available care and what their rights as patients are throughout the process. The program will also be incorporated into AKF's community outreach efforts, including Know Your Kidneys™, the nation's largest free kidney health screening program.
On Wednesday, Sept. 11 from 1-2 p.m. EDT, AKF will host a free webinar featuring Jovonni R. Spinner, MPH, CHES, head of the U.S. Food and Drug Administration's Diversity in Clinical Trials initiative. The webinar will cover what clinical trials are and how participants are protected, why diversity in clinical trials matters, and the benefits of clinical trials for science and for patient health. The webinar will be recorded and will be available on-demand on AKF's website — KidneyFund.org — following the presentation.
The webinar and educational content on AKF's website, along with additional program materials specific for minority patient engagement in clinical trials, are made possible with support from GSK.
About the American Kidney Fund
The American Kidney Fund (AKF) fights kidney disease on all fronts as the nation’s leading kidney nonprofit. AKF works on behalf of the 37 million Americans living with kidney disease, and the millions more at risk, with an unmatched scope of programs that support people wherever they are in their fight against kidney disease—from prevention through transplant. With programs that address early detection, disease management, financial assistance, clinical research, innovation and advocacy, no kidney organization impacts more lives than AKF. One of the nation’s top-rated nonprofits, AKF invests 97 cents of every donated dollar in programs, earning the highest 4-Star rating from Charity Navigator for 20 years in a row as well as the Platinum Seal of Transparency from Candid, formerly GuideStar.