Our look is new. Our purpose is the same. Learn more about our brand evolution.
Wondering what comes next after a clinical trial? This page explains how you might keep taking the medicine, when results are shared, and how approval works.
Maybe. Some clinical trials offer an open-label extension (OLE) after the main part of the study is done. This means everyone in the trial—even those who got a placebo—can choose to take the real medicine.
Open-label extensions are optional. If you decide to join, the study team will still collect information about your health while you take the medicine. This helps researchers learn even more about how the medicine works over a longer period.
Yes, you will get to learn about the overall results of the trial, but you won’t usually get your personal test scores. It may take a while—sometimes 6 to 18 months—after you finish your part in the trial. That’s because all participants must finish before the study team can look at the full set of data.
Once the results are ready, the study team may share them in a newsletter, on social media, or in a press release. The FSHD Society may also hold a webinar to explain the results to the community. Study teams usually publish results in science journals or present them at conferences too. Keep an eye out for updates!
Explore the Latest UpdatesBefore a new medicine can be given to patients, it must go through clinical trials, which can take several years. Then, the company asks health agencies like the FDA (in the U.S.) or EMA (in Europe) to approve it. These agencies review the data to make sure the medicine is safe and works well, which can take 6 to 12 months or longer.
Even after approval, patients might not get the medicine right away. Insurance companies and healthcare systems need time to decide if they will pay for it and how much it will cost. This step can take a few weeks to over a year, depending on the country.
Even though developing new medicines can be complicated, you can count on the FSHD Society to keep you updated and informed every step of the way.
Explore the Latest Updates
It depends on your insurance plan. Your insurance company will look at things like:
Once a new medicine is approved, you will need to check with your insurance provider to get a clear answer. You can also check the FSHD Society website. We’ll keep you updated and share helpful information about insurance as we get closer to a new medicine being approved.
