How to Get Started with a Clinical Trial

Interested in joining a clinical trial? This page will guide you through how to find one, see if you qualify, and take the first steps to get involved.

Finding a clinical trial

One of the best ways to find clinical trials is by visiting our website, where we always share the most up-to-date information.

Find a Clinical Trial

You can also look at clinicaltrials.gov. This website lists clinical trials and other research studies happening all around the world.

How do I use clinicaltrials.gov?

To get started on clinicaltrials.gov, try following these steps:

  1. Use the “Find a study” search tool on the homepage
  2. Check the “Recruiting and not yet recruiting studies” status box
  3. Enter “FSHD” as the condition or disease
  4. If you want, you can also add your country, state, and city to find clinical trials with study sites near you.
  5. Hit “Search”
  6. Once you get the list of results, you can use filters to narrow your search
  7. Find the “Study Type” filter and check the box to see only “Interventional (Clinical Trial)” studies.

Learn more about how to navigate clinicaltrials.gov with this short video.

How do I know if I am eligible for a clinical trial?

Clinical trialTo join a clinical trial, you must meet the inclusion criteria and not have any exclusion criteria.

  • Inclusion criteria are health conditions or traits that allow you to be part of the study.
  • Exclusion criteria are health conditions or traits that mean you can’t join the study.

These rules help decide who can and can’t take part in a clinical trial. You can check these rules on our website and on clinicaltrials.gov to see if you might qualify. Some things can only be checked by the study team, like testing your strength. But other things, like your age and health history, you can check on your own.

Genetic testing

Most clinical trials for FSHD ask that your doctor’s diagnosis is confirmed with a genetic test. This test must be done through a lab that is approved to do medical testing. Genetic tests from researchers, such as Dr. Peter Jones, are not currently approved.

If you haven’t had an approved test yet, the clinical trial might be able to give you one. But sometimes, the trial may choose people who have already had genetic testing first.

Learn How to Get Genetic Testing

How to show you are interested in a clinical trial

Use our website or clinicaltrials.gov to find the contact information for the clinical trial site you’re interested in. This is usually an email address, phone number, or a form on their website.

Reach out to the study site and tell them the name of the clinical trial you want to join. You might have to wait for them to call or email you back. This can take a few weeks—or even a few months—so try to be patient.

Find a Clinical Trial

How to improve your chances of getting a call back from a clinical trial

Sometimes, more people want to join a clinical trial than there are spots available. No one can promise you a place, but here are some tips that might help you get that initial call or email from the study team:

  • Get genetic testing. Patients who already have approved genetic testing may be prioritized by the study team. Learn more.
  • Establish care at a study site. If you live near a study site, make an appointment as a patient and start getting care there. Study sites often invite people already in their system first.
  • Willing to travel? If you can travel to more than one study site, contact each one and let them know you’re interested in the trial.
  • Share your contact info. Give your phone number and email to make it easy for study coordinators to reach you.
  • Follow up once a month. Checking in regularly shows that you’re serious and ready to take part.
  • Be patient and kind. It can take a long time to get into a study. The study team is doing their best to help everyone.