The importance of increasing representation in clinical trials

Clinical trials are research studies that test the safety and effectiveness of new treatments. They are an essential part of the process of developing new medicines, therapies and/or tools for diagnosing and treating diseases, including kidney disease.

To make sure treatments are safe and work for all people, it is important for clinical trials to include people from diverse backgrounds. Historically, Black, Hispanic/Latino, Native American and Asian American people have been underrepresented in clinical trials. This means that compared to the number of people from these communities who are living with kidney disease, few participate in clinical trials. The American Kidney Fund (AKF) has a long history of advocating for health equity, including working to increase diverse participation in clinical trials. As an organization, we are expanding these efforts to further increase awareness of the importance of participating in clinical trials, particularly for communities of color and other underrepresented communities.

If you are unsure about volunteering for a clinical trial and being one of the first to receive a new treatment, please note that treatments studied in clinical trials go through many rounds of testing before they are tested on people. There are even laws, like the Clinical Trial Participant Bill of Rights, that protect the safety and privacy of clinical trial participants.

But you may still be asking, "Why should I participate in a clinical trial?" Here are a few great reasons to sign up for one today:

• You may receive these benefits:
  • Access to new and possibly effective treatments or medicines available only to those participating in the trial
  • Low or free treatment costs
  • Focused care for your health condition
  • Learning more about your disease or health condition
• If you participate in a clinical trial, you have the unique opportunity to help society and other people with your disease or health condition while receiving care for your condition.
• Your participation advances understanding of your disease, which will then help people in the future receive more effective, better treatments.

As a clinical trial participant, you are encouraged to ask the researchers questions about the study you are participating in and bring a family member or friend for support during the treatments. You also always have the option to drop out of the trial for any reason and without penalty.

If you are interested in participating in a clinical trial for people with kidney disease or learning more about clinical trials, we encourage you to:

• Talk to your doctor and the rest of your kidney care team about whether participating in a clinical trial is right for you
• Ask your doctor if they know of any clinical trials you may qualify for
• Use AKF's online tool to find kidney disease clinical trials
• Search the U.S. government's online database of clinical trials at ClinicalTrials.gov

AKF's educational content about increasing engagement in clinical trials among underrepresented communities is made possible with support from GSK.