Myelin Disorders

The Leukodystrophy Profile allows all persons living with leukodystrophy to join the Myelin Disorders Bioregistry Project. When you join the registry, you give your permission for your information to be reviewed by experts in the field of leukodystrophy. They may contact you to participate in specific research projects appropriate for your disorder. If you have an unsolved leukodystrophy, participating the registry may help researchers identify new disorders. In addition, the bioregistry creates a DNA bank and tissue bank for research in the leukodystrophies.

What do I need to do?

1. Please fill out the registry form giving your permission for our staff to contact you.(fill out the form now)

2. Talk to our staff over the phone to give your permission (consent) for your information to be included in the registry.

3. Help our staff collect the necessary medical records and neuroimaging (CT and MRI).

4. Collect a blood sample for DNA banking.