NHS England Inherited White Matter Disorders (Leukodystrophy) Patient Registry and Service

In 2021 NHS England commissioned a new IWMD (leukodystrophy) patient service and clinical registry. Alongside Metabolic Support UK, Alex TLC were invited to represent patient voice on the development and mobilisation committees.

The role of Alex TLC is to:

• ensure patient need remains central to delivery and development
• provide support for patients accessing the service and registry
• provide an online hub for news and updates.

If you have any questions about the service or registry, please contact us info@alextlc.org.

Visit the NHS England Clinical commissioning policy page

About the service

The new NHS England IWMD Diagnostic and Management Service (all ages) strives to implement national standards of care for patients with an IWMD and improve the NHS’s understanding of care for these conditions.

The service centres are:

For adults

• The National Hospital for Neurology and Neurosurgery, Queen Square, University College London Hospitals NHS Foundation Trust (lead adult unit coordinating national hubs).

For children

• Birmingham Women’s and Children’s NHS Foundation Trust
• Guy’s and St Thomas’ NHS Foundation Trust in association with Great Ormond Street Hospital for Children NHS Foundation Trust (London)
• Manchester University NHS Foundation Trust in association with Leeds Teaching Hospital NHS Trust

To find out how the service will operate, locations of service centres, and how to be referred please go to (link to patient leaflet).

About the registry

The registry will support and align with the new service, providing vital clinical data to direct the care and treatment of leukodystrophy patients and support new research.

To find out more about the aims of the registry and how to participate, please visit the NHS England website here.

News & updates