Clinical trials for kidney health Innovations that include everyone
Clinical trials help make new kidney treatments possible. But Black and Hispanic people are still underrepresented in kidney research, even though these communities are more likely to be affected by kidney failure. When clinical trials include people from different backgrounds, researchers can better understand how treatments work for everyone. Find a trial that may fit your health needs, learn what to expect and hear from people who have taken part.
What are clinical trials?
Clinical trials are research studies that test the safety of new treatments, such as medicines, procedures or medical devices, and how well they work in people.
Clinical trials can help researchers find:
- New treatments for kidney disease
- Better ways to prevent or diagnose kidney disease
- New treatments for rare kidney diseases
- Better ways to improve kidney care
Why does diversity in clinical trials matter?
Every FDA-approved kidney treatment came from a clinical trial. But only 1 in 10 participants are Black or Hispanic - the communities most affected by kidney disease.
The people who take part in clinical trials should reflect the people who may eventually use the treatment.
Age, race, ethnicity, sex and other factors can affect how people respond to medicines and treatments. When some communities are not well represented in research, there may be less information about how well a treatment works for them.
This is especially important in kidney disease. Black and Hispanic people are more likely to develop kidney failure, but both groups remain underrepresented in clinical trials. More diverse participation can help researchers develop treatments that are safe and effective for the people who need them.
Why join a clinical trial?
People join clinical trials for different reasons. You may choose to participate to:
- Try a new treatment
- Receive additional care or monitoring
- Learn more about your condition
- Help improve future kidney treatments
Joining a clinical trial is always your choice. Before you decide, ask about the possible benefits, risks, costs and time involved.
How do I find a clinical trial?
Start by talking with your doctor. They can help you understand whether a clinical trial may fit your condition and health goals. You can also use AKF’s clinical trial matching tool to search for studies that may be right for you. If you do not find a trial that fits your needs, you can also search ClinicalTrials.gov or ask your doctor about other research opportunities.
What should I know before joining a clinical trial?
Understanding how a trial works can help you decide whether it is right for you.
Types of clinical trials
Clinical trials may study:
- Treatments
- Ways to prevent disease
- Ways to diagnose or screen for disease
- Quality of life
- Genetics
- Patterns of disease in different groups
Phases of clinical trials
Treatment trials usually move through four phases:
- Phase I focuses mainly on safety and dose.
- Phase II looks at how well the treatment works and its side effects.
- Phase III compares the treatment with treatments already available.
- Phase IV studies the treatment after it has been approved.
Benefits and risks
A clinical trial may give you access to a new treatment or additional care. There may also be risks, side effects, extra appointments or travel. Not all care during a clinical trial is free. Some costs may be covered by the trial or your health insurance, while others may not. Ask the trial team what costs you may have before you join.
Your rights and safety
Clinical trials have safeguards to help protect participants. Before joining, you will go through informed consent. This means the trial team explains the study, what you will be asked to do and the possible benefits and risks.
You have the right to:
- Ask questions
- Understand the risks and benefits
- Know what costs you may have
- Know how your information will be protected
- Leave the trial at any time
Why are some communities underrepresented in clinical trials?
People may face barriers that make it harder to join or stay in a clinical trial.
These can include:
- Not knowing clinical trials are an option
- Mistrust because of past unethical research or discrimination in health care
- Not having trials available nearby
- Transportation challenges
- Work or caregiving responsibilities
- Travel, child care or other costs
If you are interested in a trial, ask whether support is available for transportation, scheduling, travel or other costs.
Questions to ask your doctor
- Is a clinical trial an option for me?
- What treatment is being studied?
- What are the possible benefits and risks?
- How long will the trial last?
- How often will I need appointments or tests?
- Will I need to travel?
- What costs will I have?
- What happens if I decide to leave the trial?
Participating in Clinical Trials
AKF Ambassador Patrick Gee shares why he chose to take part in a clinical trial. His story is a powerful reminder of how participation from people of color helps build a healthier future for all.
"Participating in clinical trials is important because your life matters, your health matters and future generations matter. And by doing this, that's one step toward mending a broken healthcare system." Patrick Gee
Read Patrick's story
Get involved and join the fight
Join AKF's movement for kidney health equity. Learn how to become a Kidney Health Coach, apply for grants, partner with us, train as an advocate, or share your story to help prevent kidney disease and support communities.
Resources
Resources and tools
Learn about preventing and managing kidney disease.
- Talk to Your Doctor Guide
- Home Dialysis Decision Aid
- Talk with your patients about home dialysis: Learn the OARS technique
- Your guide to kidney transplants
- Post transplant toolkit
- Genes to Generation: Know your family’s health history
- Talk With Your Patient about Clinical Trials
- Talk To Your Doctor about Clinical Trials
- Organ and Tissue Donation Myths Debunked
- Kidney Health for All resources
Test your knowledge
Take this quick quiz to check your understanding of clinical trials and how impactful diverse participation ensures everyone's voice counts in kidney research