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NHS England Patient Service & Registry

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

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.

We have produced resources to support individuals and families attending the IWMD service so they can understand the support available from Alex TLC.

  • Letter with information about our support services: Letter

  • Postcard with brief information about our charity: Postcard

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

To find out further information, 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 lead adult unit is the National Hospital for Neurology and Neurosurgery, University College London Hospitals NHS Foundation Trust
uclh.nhs.uk/our-services/find-service/neurology-and-neurosurgery/inherited-white-matter-disorders

The lead adult unit coordinates national coverage and works in association with:

For children

To find out how the service will operate, locations of service centres, and how to be referred please go to IWMD service patient information 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.

The registry will go live in 2025.

To find out more about the aims of the registry and how to participate, please contact info@alextlc.org.

Additional support & information

As part of our role as public patient voice representatives for the service and registry, Alex TLC and Metabolic Support UK work collaboratively with a variety of like-minded organisations.

Please find a list of additional organisations and the individual conditions for which they offer support: