The importance of diversity in kidney disease trials: A Q&A with the American Kidney Fund
Kidney diseases are one of the top causes of death in the United States, and worldwide, they impact nearly 10% of the population each year. Because chronic kidney disease typically has no cure, it is vital that medical research takes place to find new and more effective treatments for those who have been diagnosed.
To talk about the importance of medical research, why it is key to recruit diverse populations in clinical trials, and what resources exist for those with kidney disease, we chatted with the team at the American Kidney Fund — check out our discussion below.
How does AKF build community and educate on the importance of participating in medical research?
AKF has a variety of resources about clinical trials, including a page specifically dedicated to the importance of diversity in clinical trials. We have conducted educational webinars, created an infographic walking patients through the phases of a clinical trial, and developed a quiz exploring the myths and facts about clinical trials. We also dedicated a Kidney Action Week session to discussing clinical trials.
Our Ambassador network, comprised of kidney patients, caregivers, and healthcare professionals from across the country, helps advocate for and promote important kidney-related issues, including the importance of participating in clinical trials. They have shared their experiences participating in clinical trials in blog posts and patient videos. Additionally, Dr. Pablo Garcia, an alumnus of AKF’s Clinical Scientist in Nephrology program, also participated in an English and Spanish language radio media tour earlier this summer, answering questions about clinical trials and explaining why it is important to have a diverse group of participants.
How does your partnership with Antidote enable you to drive participation in medical research?
Our partnership with Antidote has allowed us to incorporate their unique Match tool on our website. Through this easy-to-use tool, patients can navigate the clinical trial process and find the trial that is the best match for them to participate in. Ultimately, this helps reduce possible barriers to entry for trials, increasing participation.
Why is it important to promote diversity, equity, and inclusion in kidney disease research?
Research has shown that people may have different reactions to treatments based on their race, ethnicity, gender, age, and other factors. To make sure that treatments are safe and work for all people with kidney disease, it is important for clinical trials to include people from diverse backgrounds.
Unfortunately, communities of color are disproportionately affected by kidney disease and underrepresented in clinical trials. Black, Hispanic, Native American and Asian American people have a greater chance of having kidney failure compared to white people. More than 1 in 3 people (about 33%) with kidney failure are Black, and Hispanic/Latino American people are nearly 1.5 times more likely to have kidney failure compared to non-Hispanics. Unfortunately, only about 1 in 10 clinical trial participants (about 9%) are Black and only about 1 in 10 clinical trial participants are Hispanic. This is why it is important for clinical trials to include participants of different races, ethnicities, genders, and ages – and to promote participation in clinical trials within communities of color.
How can those with kidney disease get involved with your organization?
One of the best ways to get involved is through our Ambassador network. Those interested in joining can apply on our website. Additionally, people who are passionate about preventing kidney disease and educating others can become a Kidney Health Coach (KHC), AKF’s free, community health education program. The online KHC training course provides information about preventing, managing, and treating kidney disease, as well as living a healthy lifestyle through a series of four modules.
We also have an annual program in which children and teens with kidney disease can enter our Calendar Kids Art Contest for an opportunity to have their original artwork featured in our calendar, with one lucky winner featured as the cover artist and honored at our annual gala, The Hope Affair.
For those interested in helping raise funds for the kidney community, we suggest joining KidneyNation. Through KidneyNation, you can create your own unique fundraiser, donate to someone else’s fundraiser or participate in our 37 Mile Challenge, a walk or run challenge to help raise awareness and funds for kidney disease. The mileage is a nod to the 37 million Americans with kidney disease. AKF takes pride in the fact that 97 cents of every donated dollar goes directly to AKF’s patients and programs.
Lastly, we encourage people to follow AKF on our social media channels to stay engaged.
