I have IgA nephropathy, and my kidney function is starting to get worse. There's a lot of research on new treatments. How do I know if a clinical trial is right for me?

Living with IgA nephropathy (IgAN), complement 3 glomerulopathy (C3G) or another type of chronic kidney disease can be concerning and interfere with your quality of life. Current treatments can slow the progression of kidney disease, but if you're not responding to treatments, you might wonder if a clinical trial is your answer.

Clinical trials give you access to potential medicines and procedures. But there are risks involved in trying new treatments. If you're considering a clinical trial, it helps to understand the types of trials available, where to find them, pros and cons, and questions to ask.

Types of clinical trials

Quite a few types of clinical trials are available. If you're looking to try something new, you might be interested in a trial that:

  • Tests new treatments — such as new medicines and surgical procedures — or new approaches, such as combining two types of treatment.
  • Compares one treatment with another.
  • Studies whether lifestyle changes, such as a specific diet, can better preserve kidney function.

Other trials may follow the course of kidney disease to learn how it progresses with time or may look for genes involved in developing a chronic kidney disease.

Finding clinical trials

Your health care team is a good place to start for learning about clinical trials in your area that you may qualify for. You also can find trials on government websites, such as the Food and Drug Administration's site or ClinicalTrials.gov. Patient organizations also may help you find trials.

Clinical trial pros and cons

When you're in a clinical trial, especially a phase 1 or 2 trial, the treatment isn't specifically designed to help ease symptoms. The main goal is to test whether a medicine is safe and if it works. The potential treatment may not be effective, or it may have side effects that you can't tolerate.

Some trials also include a group of people given a nonactive treatment, called a placebo. Researchers compare the active treatment and placebo groups to see how well a treatment works. In such a trial, you might receive the placebo, though you won't be told until the end of the trial.

While there are drawbacks, a clinical trial may give you the chance to try a new treatment. And even if the trial doesn't benefit you, it may help others in the future. Consider if that's a risk you're willing to take.

Questions to ask

Don't hesitate to ask the researchers questions so that you fully understand what's involved in the trial. Possible questions include:

  • What do I need to do for this study?
  • How long will the study last?
  • What are the possible side effects?
  • Will this treatment help give me relief?
  • Can I continue my current treatments?
  • Who pays for study appointments and treatments?
  • If I have side effects related to the clinical trial, who pays for any additional treatment needed?
  • How often do I have to return for a checkup? How long will the testing be when I do?

Talk to your health care team as part of the decision-making process. They can make sure you've considered all the pros and cons, as well as help coordinate your current care with any clinical trial treatments.

With

Fouad Chebib, M.D.

May 05, 2023