The Myelin Disorders Biorepository Project (MDBP)

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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.

Who Do I Contact?

If you are interested in participating in the study or want to learn more please contact our study team at sherbinio [at] chop.edu or 215-590-3068.

Eligibility & Criteria

IRB #:
14-011236
Official Title:
The Myelin Disorders Biorepository Project and Global Leukodystrophy Initiative Clinical Trials Network
Study Phase:
Not Applicable
Eligible Age Range:
Any
Gender:
All

Visit Criteria

This study includes activities that can be performed remotely (e.g., collection and review of medical records) as well as activities (e.g., functional assessments by physical and/or occupational therapists) that can only be performed in the context of a visit to a participating study site, including the Children's Hospital of Philadelphia. You may choose which study activities to participate in, and you will not be required to visit a study site in order to participate in the study. Time commitment may vary depending on which components of the study you decide to participate in, and you will have an opportunity to discuss this with a qualified member of the study team and ask questions before you agree to participate in the study.