The Myelin Disorders Biorepository Project (MDBP)
This study is now recruiting.
This study involves the collection of medical information and samples from people with suspected leukodystrophies and their relatives to help clarify the type of the leukodystrophies and significantly advance our understanding of the cause of these diseases, the best tools to diagnosis them, and the best way to manage these conditions. Participating involves the collection of biological samples (like blood) and the collection of information about you (from your medical records, interviews, and questionnaires). Participation may also include research genetic testing. You may be asked to respond to surveys to describe the impact of the leukodystrophy on you/your family. Participation timing can vary, depending on what you're asked to do. We will discuss this with you before asking you to agree.