Myelin Disorders

The Virtual Second Opinion Program provides patients, their caregivers and medical providers with second opinions via a web based interface that shares medical records and neuroimaging (MRI or CT) with experts in leukodystrophy.

Who should participate in the Virtual Second Opinion Program? Patients or their medical providers with an unsolved leukodystrophy or leukoencephalopathy may participate in the virtual second opinion program.

What do I need to do to participate in the Virtual Second Opinion Program? Patients or their medical providers who participate will be asked to submit detailed medical records and neuroimaging (CT and MRI images of the brain), as well as provide a blood sample.

What will happen if I participate in the Virtual Second Opinion Program? The information about the patient will be shared with experts in the field (see CELLs) who will review it and provide a second opinion about the possible causes of the leukodystrophy and recommended testing. In addition, the sample of blood will be used for DNA banking. If other patient tissues have been obtained in the past, a donation of these may be requested for tissue banking.

What are my alternatives to the Virtual Second Opinion Program? If you do not participate you may still seek clinical care with an expert in these disorders. Find a Center of Excellence in Leukodystrophy and Leukoencephalopathy near you now.

How do I get started? If you would like to participate in the virtual second opinion program, please create your Leukodystrophy Profile now. Medical Providers please click here.