Without clinical trials, the medicines millions of people rely on to treat or cure diseases would not have become available. Clinical trials examine the safety and effectiveness of new treatments in people, and this research plays a key role in developing ways to prevent, detect and treat diseases.
Many people may not know they can volunteer to participate in clinical trials, an undertaking that may potentially advance scientific breakthroughs while helping people around the world live healthier lives. Today, more than 425,000 such research studies are underway in the United States, according to the National Institutes of Health.
Why Diversity is Important in Clinical Trials
To ensure new treatments work well for all people, it is crucial for clinical trials to include volunteers from different backgrounds. Research shows people may have different reactions to treatments based on their race, ethnicity, gender, age, and other factors, which makes it important for clinical trials to include a diverse range of participants. However, most clinical trials do not include participants that represent the diverse population of the United States.
Research in kidney disease provides a prime example of why such representation is important. Clinical trials have resulted in new treatments to slow damage to the kidneys and prevent kidney failure and death. However, despite having a greater chance of developing kidney failure, people of color remain underrepresented in kidney disease clinical trials.
About 33% of people with kidney failure are black, but only about 1 in 10 clinical trial participants are black, according to the American Kidney Fund (AKF). The disparity also exists for Hispanic people, who are nearly 1.5 times more likely to have kidney failure than non-Hispanics. However, only 1 in 10 clinical trial participants are Hispanic.
Many complex barriers contribute to a lack of diversity in clinical trials. Such barriers include mistrust among certain communities based on historical abuses, racial biases among health care providers, language and cultural differences and a lack of access to information about clinical trials and their safety measures.
“Clinical trials today have important safeguards to not only ensure the safety and fair treatment of participants but also ensure they meet ethical standards,” said LaVarne Burton, president and CEO of AKF. “These measures are critical toward achieving diversity and inclusion in clinical trials so approved treatments work well for those who so greatly need them.”
Learn More About Participating in Clinical Trials
People can join a clinical trial as a healthy volunteer or patient with the disease being studied. Clinical trials often benefit patients because they can receive access to care and promising new treatments or medicines that are not yet available to the public.
Patients can always ask their doctors for recommendations about clinical trials they may qualify for, but this is not required. People can also find clinical trials on their own through reputable online resources.
Anyone interested in joining a clinical trial should gather as much information as possible about the study beforehand, such as what the study will entail, possible side effects and risks, and what type of time commitment is needed. Before taking part in a trial, talk with the treatment team about any concerns to ensure you have the confidence to make an informed decision about joining.
If you are interested in clinical trials related to kidney disease, you can find more resources about the clinical trial process and get matched with a clinical trial at Kidneyfund.org/clinical-trials.
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