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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

Meet the IWMD professionals

The IWMD service centres are run by a variety of different health care professionals. This includes neurologists, clinical nurse specialists (CNS), genetic counsellors and service co-ordinators. You can find out more about the IWMD professionals by visiting our NHS England IWMD leukodystrophy professionals webpage.

Meet the professionals

Join the IWMD registry

The NHSE IWMD Registry is an online clinical database that contains information about people with IWMDs or leukodystrophies. The service strives to implement national standards of care for patients with an IWMD (leukodystrophy) and improve the NHS’s understanding of these conditions.

If you or someone you care for has a confirmed or suspected diagnosis of an IWMD, are a resident of the UK and are registered with a GP, you may be invited to apply to join the registry by the clinician at your IWMD Centre or by a consultant at a local hospital where you/the patient receives care.

To find out more about the registry: IWMD information for patients and families

To find out how to get involved in the registry: IWMD registry 

If you have any questions, 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: