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.
If you have any questions about the service or registry, please contact us email@example.com.
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:
The lead adult unit is the National Hospital for Neurology and Neurosurgery, University College London Hospitals NHS Foundation Trust
The lead adult unit coordinates national coverage and works in association with:
- University Hospitals Birmingham NHS Foundation Trust
- Leeds Teaching Hospitals NHS Trust
- Northern Care Alliance NHS Foundation Trust (Salford Royal)
- 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.
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 firstname.lastname@example.org.
News & updates
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.
Amy & Friends
ArchAngel MLD Trust
CADASIL Support UK
MLD Support Association UK
Cockayne Syndrome, trichothiodystrophy
Cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy
Hypomyelination with atrophy of the basal ganglia and cerebellum
Leigh’s Disease, Mitochondrial Disease related Leukodystrophies
Fucosidosis, GM1 gangliosidosis, Alpha Mannosidosis/ Lysosomal Acid Lipase Deficiency, Metachromatic Leukodystrophy, Sialic Acid Storage Disorders
Infantile Refsum’s Disease, Neonatal Adrenoleukodystrophy, Zellweger Syndrome