PARTICIPATE IN RESEARCH
Research is only as powerful as the volunteers who make it possible.
Research participants are the key to helping researchers around the world better understand the causes of these disorders, allowing them to develop novel diagnostic tools and therapies. Research has also paved the way for more effective clinical approaches, allowing physicians to deliver better follow-up care for our patients. In fact, many of our physicians have their own labs, and are very involved in research - an indication of how strongly they believe in the promise of new scientific discoveries.
The most important component of any research is YOU. Participation in a research project can take on many different forms, and how you want to participate is entirely up to you. You can join one of our natural history studies, which simply collect health information in order to understand how the medical condition or disease develops and how to treat it. You may also join a bioregistry, which also involves submitting biological samples (usually just some blood in a tube) to try to understand the disorder on a molecular or genetic level. More recently, some of our experts have also launched clinical trials, which may either look at new approaches to diagnose or treat certain white matter disorders. These usually have strict eligibility requirements, but we encourage you to check our list of ongoing studies regularly. We will periodically update this list with actively enrolling studies and clinical trials.