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:

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 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 (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.

The registry will go live towards the end of 2023.

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

News & updates

https://www.england.nhs.uk/2023/03/nhs-patients-with-rare-genetic-disorders-to-be-fast-tracked-to-earlier-diagnosis-and-specialist-care/

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 below a list of additional organisations and the individual conditions for which they offer support.


ORGANISATION

Amy & Friends

ArchAngel MLD Trust 

CADASIL Support UK

H-ABC Foundation

Krabbe UK

Lily Foundation

MLD Support Association UK 

MPS Society


Zellweger UK


CONDITION/S SUPPORTED

Cockayne Syndrome, trichothiodystrophy

Metachromatic Leukodystrophy

Cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy

Hypomyelination with atrophy of the basal ganglia and cerebellum

Krabbe Leukodystrophy

Leigh’s Disease, Mitochondrial Disease related Leukodystrophies

Metachromatic Leukodystrophy

Fucosidosis, GM1 gangliosidosis, Alpha Mannosidosis/ Lysosomal Acid Lipase Deficiency, Metachromatic Leukodystrophy, Sialic Acid Storage Disorders

Infantile Refsum’s Disease, Neonatal Adrenoleukodystrophy, Zellweger Syndrome