The Inherited White Matter Disorders (IWMD) Diagnostic and Management Service is a formally commissioned highly specialised service. There are seven centres across England. There are three centres for children. For adult patients, the service is lead by UCLH at the National Hospital for Neurology and Neurosurgery (NHNN), Queen Square. UCLH is working in partnership with a number of other sites across England so that patients may access local support. These sites will provide coverage for the Midlands and North of England.
Referrals to our service are accepted from tertiary neurology, metabolic or clinical genetics services, secondary care services, or other specialised services. Referrals are accepted where there is suspect or confirmed rare IWMD and the patient meets the inclusion criteria outlined in the national specification.
The aim of the service is to provide advice and guidance to local hospitals in the diagnosis and management of adults with suspected or confirmed IWMD. In the majority of cases, the patient will attend local services for tests and scans. In some cases, a patient will be supported to attend a clinic at either at NHNN or one of our partner sites for review by a specialist team.
The specialist team includes consultants in neurology, metabolics, clinical genetics, neuroradiology, as well as a neurology nurse and neuropsychologist. Each have experience with diagnosing and managing patients with IWMDs.
Inherited White Matter Disorders (also known as leukodystrophies) are genetic disorders that primarily affect the white matter of the nervous system (the brain, spinal cord and peripheral nerves). Many, but not all, IWMDs are progressive diseases where there is increasing neurological impairment affecting cognitive skills, mobility, speech, vision, hearing and bladder and bowel function. For some disorders this may result in a limited or reduced life span.
There are many different IWMDs and how someone is affected depends on the cause of the white matter disease. IWMDs affect males and females of all ages and ethnic backgrounds.
Conditions treated:
- Inherited White Matter Disorders
- Leukodystrophies
- Genetic Leukoencephalopathies
Service management
Rachel Bambi
Address
Inherited White Matter Disorders HSS
National Hospital for Neurology and Neurosurgery
Queen Square
London
WC1N 3BG
