Have you ever considered participating in a clinical trial for kidney disease? Whether you’re on the fence about joining a clinical trial or don’t know how the process works and would like to learn more, the American Kidney Fund (AKF) explains what clinical trials are, how they work, and the potential benefits—for both yourself and other people with kidney disease—of joining a clinical trial.*

What are clinical trials? What is their purpose?

Clinical trials are medical research studies that explore the effectiveness and safety of new methods to improve human health. Any new medical products, procedures, or techniques must go through many rounds of rigorous testing before the U.S. Food and Drug Administration (FDA) can approve it to be made available for widespread use.

The following are the different types of clinical trials:

• Treatment trials test new medicines, treatments, or therapies. Treatment trials involving people form the last phase of testing, after laboratory and animal testing. 
• Prevention trials explore new and/or improved ways to prevent disease, pain, or disability with methods, such as medications, supplements, vaccines, or behaviors. 
• Diagnostic or screening trials seek the best ways to detect and diagnose a disease or other health condition.
• Quality of life trials examine how treatment or therapy side effects affect patients’ well-being and day-to-day functioning. 
• Genetic trials explore how genes (DNA) are related to certain diseases or health conditions.
• Epidemiological trials seek patterns of symptoms, diseases, or health conditions across populations, such as geographic locations, genders, races/ethnicities, behaviors (like smoking), and more.

The teams that conduct clinical trials must follow strict ethical protocols to protect the safety and privacy of all participants. 

What are the pros of participating in a clinical trial?

The potential pros, or benefits, of participating in a clinical trial are many, all of which extend beyond your personal situation. 

Clinical trials:

• usually provide first-class care and include free or reduced-cost treatment;
• enable you to access new treatments and therapies before they go on the market;
• enhance the way all levels of healthcare professionals are trained;
• impact health laws and health service funding;
• add to medical knowledge, helping you and others living with the same health issue as you;
• provide you with regular, attentive care from a team of research and health professionals; and
• may pay you for your participation. 

What are the cons of participating in a clinical trial?  

When you decide to join or participate in a clinical trial, there are a few potential drawbacks and risks involved, which could be significant to you and your family.

• You may have more frequent doctor visits than usual. 
• You may or may not experience health improvements as a result of the study. 
• You may experience unpleasant, serious, or life-threatening side effects  
• You may have to lay out money for travel (to visits), medications, and testing that is not reimbursed by your insurance company.

How do I find a clinical trial to join?

There are several ways to find clinical trials that might be a good fit for you. The National Institutes of Health (NIH) conduct and support a wide variety of studies. 

Online databases you can search include:

• ClinicalTrials.gov: A searchable registry and results database of federally and privately supported clinical trials being conducted both inside and outside of the U.S. Be sure to read the disclaimer—not all listed trials have been evaluated by the U.S. government.
• NIH Clinical Research Studies: An online database of clinical research studies taking place at the NIH Clinical Center, located on the NIH campus in Bethesda, Maryland.
• ResearchMatch: A free and secure NIH-funded registry intended to connect people seeking research studies and researchers seeking study volunteers.

Before signing up for a clinical trial, discuss the potential benefits and risks with your doctor or healthcare provider.

For further information on clinical trials, please head to the following websites:

• American Association of Kidney Patients: “Clinical Trials and Market Research”

• American Kidney Fund: “What is a clinical trial?”

• National Institutes of Health: “Finding a Clinical Trial”

• National Institute of Diabetes and Digestive and Kidney Diseases: “Clinical Trials for Chronic Kidney Disease”

*American Kidney Fund. (2020). Clinical Trials. https://www.kidneyfund.org/kidney-disease/clinical-trials/

*National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). (2019, May 16).  Why Should I Join a Clinical Trial?.  https://youtu.be/36Sd8WpgR94