The Inherited White Matter Disorders (IWMD) Service is an NHS England highly specialised service for children and adults with genetic brain white matter disorders, also known as leukodystrophies. The main IWMD centre for adult patients is located at the National Hospital for Neurology and Neurosurgery in London. The IWMD London team works in partnership with the other adult IWMD teams from Salford, Birmingham and Leeds, to streamline diagnosis, management and research projects for adult patients with IWMD.
Referrals to Salford Inherited White Matter Disorders (IWMD) team are welcomed from specialised services in Greater Manchester ( i.e. Neurology / Metabolic Medicine / Clinical Genetics etc) or from Neurology Services from areas outside of Greater Manchester, on the email address salfordadultiwmd@nca.nhs.uk.
The service will accept referrals for patients who meet the following criteria:
- Suspected IWMD
- Confirmed IWMD only for a specific clinical question concerning management, treatment, or participation in a treatment trial. For patients with confirmed diagnosis of IWMD, regular review at the IWMD Centres would only occur if the patient was part of a treatment study.
Referring doctors are encouraged to include as detailed information as possible regarding previous test results and other relevant information in the referrals. Patients should have blood test results for HIV, Syphilis, Hep B, Hep C, White Cell Enzymes, Amino Acids, Very Long Chain Fatty Acids, as well as Urine Amino Acids prior to referrals being submitted, to avoid unnecessary diagnostic delays.
Images also need to be transferred via PACS/SECTRA, with actual radiology reports submitted together with the referral. Unless indicated otherwise in the clinical assessment outcome by the Salford IWMD team, patients referred to the Salford IWMD service should remain under the local care of the referring consultant.
The Salford IWMD clinical lead, Dr Georgeta Taylor- Manchester Centre for Clinical Neurosciences (MCCN) consultant neurologist, or the Salford IWMD coordinator- Mrs Sue Aldred, will acknowledge acceptance where the inclusion criteria outlined in the IWMD service specification are met.
Where appropriate, the patients will be assessed in an outpatient clinic in Salford Royal Hospital and / or their case will be discussed at a virtual multidisciplinary team meeting with the London Inherited White Matter Disorders (IWMD) team, which the referring consultant can also attend.
All patients diagnosed with IWMD through the service are automatically enrolled in the IWMD Registry. The registry is not closely monitored by the clinical team and patients should continue to contact their doctors, through their secretaries, if they need support in managing their symptoms or addressing other health issues.
All patients diagnosed with IWMD are advised to contact Alex - The Leukodystrophy Charity on their website for additional support and guidance.