The Congenital Muscle Disease International Registry (CMDIR) aims to advance neuromuscular research by collecting vital data and by growing advocacy for congenital muscular dystrophies.
The CMDIR was created in 2009 with the aims to raise awareness and standards of care, assist patients with enrolment in clinical trials and generally aid the research community in developing new treatments and therapies for congenital muscular disorders. The registry currently includes over 3,000 affected individuals from 86 countries around the world.
Patient participation in the CMDIR provides the research community with data that plays a critical role in better understanding congenital muscle diseases, helping recruit patients for clinical studies and in maintaining funding and research. The registry offers a range of opportunities, such as participation in advocacy projects, contribution to clinical trial developments, the chance to connect with other patients and families around the world, and educational resources about different muscle disorders are also available.
Patients have the power to advance research
MDC1A patients, as well as patients with many other congenital muscular diseases, can all register with the CMDIR. Patient privacy is a top priority, and any data provided by patients is ‘de-identified’ so as to protect patient identity. Data that is provided by patients typically include information about diagnostics, family history and genetic testing reports. Cure CMD, a nonprofit organisation leading the way in advancing research for congenital muscular dystrophies in the USA, encourages patients around the world to register with the CMDIR. The data provided by patients and families truly helps making a difference!
The patients have the power to advance research, and to identify and answer the questions that matter most! By joining all our efforts and by working together, real progress is being made towards finding new treatments. To register and to find out more information, please visit https://www.cmdir.org/.