Passport to a Cure
If you are an FSHD patient, when you apply for a passport, you’ll receive the latest information on trials and join the waitlist for our free testing.
With your support and the expertise FSHD Global Research Foundation can provide, we can give children, individuals and whole families the certainty of a formal diagnosis and the tools they need to take advantage of clinical trials and eventually treatments and cures when they become available.
Few who believe they may have FSHD possess the resources to navigate the complex process of receiving a formal diagnosis and becoming clinical trial ready.
Without your support, it would cost each patient $6,000 for the required testing alone.
Not only do patients receive free testing through FSHD Global, as a bonus, when people complete all the required information in the passport registry, they get a free 3D full body Springbok MRI scan. This invaluable tool helps them understand how their muscles are functioning and guides physiotherapy and exercise that can help them right now as they are waiting for a treatment.
What is the Clinical Trial Passport?
The Clinical Trial Passport is a set of information and test results that helps researchers and clinicians better understand FSHD, develop treatments, and ultimately provide a cure. It includes:
1. Q&A to gather valuable information that helps researchers better understand FSHD in the population and in each patient’s unique situation
2. FREE saliva test kit that anyone can perform in the comfort of their own home
3. If the saliva test indicates they may have FSHD, it is important to do a traditional blood test to identify the genetic cause, as this determines eligibility for clinical trials
4. A full body MRI scan provides a baseline look at the health of muscles
5. An AI-powered digital twin from Springbok Analytics will improve clinical trials and give useful information right now to guide physiotherapy
6. Finally, this is a stressful time for those diagnosed and a mental health assessment will ensure they get the support they need
