Know the difference
by Amanda Hill, FSHD Society
In your journey with FSHD, you’ve probably heard about the importance of seeing your doctor regularly. You also most likely have heard about the impact you can make by taking part in clinical research and clinical trials. But sometimes the difference between these two activities isn’t clear.
For example, you may not have a regular doctor for your FSHD. You may instead decide to take part in a clinical trial, where you can acquire access to FSHD doctors and an experimental medicine. Or you may have a regular doctor who also tells you about research studies you can take part in.
So what is the difference between getting clinical care and participating in clinical research?
Clinical care is what you receive when you see your primary care doctor, nurse practitioner, physician’s assistant, or neurologist for a regular check-up or to get treatment for a health issue. Many FSHD patients find a lot of value in seeing a neurologist at least once per year. Your clinical care team will monitor your FSHD and your overall health, as well as provide any medical treatments or referrals to specialists you may need.
During a clinical care visit, your provider may talk to you about taking part in a clinical trial if there isn’t a good treatment option available (this is currently the case for FSHD).
In contrast, clinical research and clinical trials are designed as scientific experiments to learn more about disease or possible treatments. There is no guarantee that the research will directly benefit you at that time. Any medicine you may receive as part of a clinical trial is experimental. The researchers don’t know yet whether it will work. Furthermore, in a clinical trial, you may not even receive medicine; you may receive a placebo. But by taking part, you are supporting research that may help patients in the future (including yourself).
What can become confusing is that sometimes the doctors you see for clinical care are the same people who perform clinical research. However, they are usually supported by different teams of professionals and sometimes use different facilities.
If you are interested in taking part in clinical research or clinical trials in the future, it’s usually a good idea to establish care in a clinic that also does research. This is because the research team often recruits participants from among the patients who are seen at the same center. Centers that provide clinical care and perform research include the 21 current members of the FSHD Clinical Trial Research Network.
Here’s a helpful breakdown of the differences between clinical research and clinical care: