Joshua Frase Foundation - Joining the community and patient registry
Please join our patient registry and be counted as one of the members of our community www.cmdir.org.
What is a patient registry?
A registry is like a phonebook that stores names, phone numbers and information about people. A patient registry is a database of medical information gathered to:
- Count the number of people with a given disease
- Raise awareness
- Support research working towards a cure
- See how the disease affects people differently
- Connect researchers and families for treatment
- Help doctors make the best health plan for people with muscle diseases
About the Congenital Muscle Disease International Registry
The Congenital Muscle Disease International Registry (CMDIR) was created to identify the global congenital muscle disease population and includes individuals with congenital myopathies (all subtypes), congenital muscular dystrophies (all subtypes), congenital myasthenic syndromes, and the limb girdle spectrum. The CMDIR collects important information like disease symptom information, and medical records.
Why should I register in the CMDIR?
Simply put, we will not be successful in finding effective treatments, or eventually cures, unless we know who the affected individuals are, what their diagnoses are, and how the disease is affecting them.
By registering you will also receive:
- CMDIR newsletters
- Notice of available clinical trials that apply to your registered profile
- Notice of available therapies that apply to your registered profile when they become available
The number of people affected by MTM-CNM is so small, which makes each and every person’s information so critical to understanding this disorder and working towards a cure. You can register online from the comfort of your own home. Please register today, it’s important!
Go to www.cmdir.org.