Help the development of the IWMD Registry

There is an opportunity to be involved in the pilot testing of the registry for the NHS England Inherited White Matter Disorder Service (IWMD).

The Patient Registry is specifically for leukodystrophy patients and will support the IWMD Service. The Registry will collect and analyse data from patients with leukodystrophy as provided by medical professionals, patients, and/or patient representatives such as designated family members/carers. The aim is to help support diagnosis, direct care management, treatments, and outcomes as part of the patient’s pathway of care.

The pilot testing of the registry will involve entering dummy data which will be deleted once the pilot is completed. You will not be asked to use real names, dates, or any information that could be identifying. If you choose to take part, then you will be sent a user guide with full details of what to expect and how to access the pilot. Your involvement will support the development of a vital service for our community.

If you have any questions or are interested in being involved in this project, please contact info@alextlc.org