ON THIS PAGE: You will learn more about clinical trials, which are the main way that new medical approaches are studied to see how well they work. Use the menu to see other pages.
What are clinical trials?
Doctors and scientists are always looking for better ways to care for people with myelodysplastic syndrome (MDS). To make scientific advances, doctors create research studies involving volunteers, called clinical trials. In fact, every drug that is now approved by the FDA was tested in clinical trials.
Many clinical trials focus on new treatments. Researchers want to learn if a new treatment is safe, effective, and possibly better than the standard treatment doctors use now. These types of studies evaluate new drugs, different combinations of existing treatments, new approaches to radiation therapy or surgery, and new methods of treatment. People who participate in clinical trials can be some of the first to get a treatment before it is available to the public. However, there are some risks with a clinical trial, including possible side effects and that the new treatment may not work. People are encouraged to talk with their health care team about the pros and cons of joining a specific study.
Some clinical trials study new ways to relieve symptoms and side effects during treatment. Others study ways to manage the late effects that may happen a long time after treatment. Talk with your doctor about clinical trials for symptoms and side effects. There are also clinical trials studying ways to prevent cancer.
Deciding to join a clinical trial
People decide to participate in clinical trials for many reasons. For some, a clinical trial is the best treatment option available. Because standard treatments are not perfect, patients are often willing to face the added uncertainty of a clinical trial in the hope of a better result. Others volunteer for clinical trials because they know that these studies are a way to contribute to the progress in treating MDS. Even if they do not benefit directly from the clinical trial, their participation may benefit future people with MDS.
Insurance coverage of clinical trials costs differs by location and by study. In some programs, some of the expenses from participating in the clinical trial are reimbursed. In others, they are not. It is important to talk with the research team and your insurance company first to learn if and how your treatment in a clinical trial will be covered. Learn more about health insurance coverage of clinical trials.
Sometimes people have concerns that, in a clinical trial, they may receive no treatment by being given a placebo or a “sugar pill.” A placebo is never given as the only treatment. Placebos are usually combined with standard treatment in most cancer clinical trials. When a placebo is used in a study, it is done with the full knowledge of the participants. Find out more about placebos in cancer clinical trials.
Patient safety and informed consent
To join a clinical trial, people must participate in a process known as informed consent. During informed consent, the doctor should:
Describe all of the treatment options, so that the person understands how the new treatment differs from the standard treatment.
List all of the risks of the new treatment, which may or may not be different from the risks of standard treatment.
Explain what will be required of each person in order to participate in the clinical trial, including the number of doctor visits, tests, and the schedule of treatment.
Describe the purposes of the clinical trial and what researchers are trying to learn.
Clinical trials also have certain rules called “eligibility criteria” that help structure the research and keep patients safe. You and the research team will carefully review these criteria together. You will need to meet all of the eligibility criteria in order to participate in a clinical trial. Learn more about eligibility criteria in clinical trials.
People who participate in a clinical trial may stop participating at any time for any personal or medical reason. This may include that the new treatment is not working or there are serious side effects. Clinical trials are also closely monitored by experts who watch for any problems with each study. It is important that people participating in a clinical trial talk with their doctor and researchers about who will be providing their treatment and care during the clinical trial, after the clinical trial ends, and/or if they choose to leave the clinical trials before it ends.
Finding a clinical trial
Research through clinical trials is ongoing. For specific topics being studied for MDS, learn more in the Latest Research section.
There are many resources and services to help you search for clinical trials for MDS, including the following services. Please note that these links will take you to separate, independent websites:
ClinicalTrials.gov. This U.S. government database lists publicly and privately supported clinical trials.
World Health Organization (WHO) International Clinical Trials Registry Platform. The WHO coordinates health matters within the United Nations. This search portal gathers clinical trial information from many countries’ registries.
Read more about the basics of clinical trials matching services.
In addition, this website offers free access to a video-based educational program about clinical trials, located outside of this guide.
The next section in this guide is Latest Research. It explains areas of scientific research currently going on for MDS. Use the menu to choose a different section to read in this guide.