The UK Incidence and Prevalence of Inherited White Matter Disorders

Read more about the study HERE

To participate:

  1. Complete case notification form and email to lydia.green2@nhs.net
  2. On receipt of your unique case ID, please complete the case questionnaire-note, this is initially a downloadable form, but will be a link to an online survey once REDcap is finalised.

    Return completed forms to lydia.green2@nhs.net

  3. When notified by the study team (following consent) please complete the PACS image transfer form and send to your local PACS office

Principal Study Investigators
Professor JH Livingston
Consultant Paediatric Neurologist and Honorary Senior Lecturer
Department of Paediatric Neurology, Leeds Teaching Hospitals Trust
Leeds, UK

Dr LMC Green
NIHR Academic Clinical Fellow and Paediatric Neurology Registrar
Department of Paediatric Neurology, Leeds Teaching Hospitals Trust
Leeds, UK

Case Definition

Patients with a genetic (or presumed genetic) disorder primarily affecting their white matter (leucodystrophy) or with a genetic (or presumed genetic) disorders with marked white matter abnormality on MR imaging. 

Age: 0-16 years

Inclusion Criteria:

a. A new1 (within the previous 12 months) patient with proven or suspected leukodystrophy

b. A pre-existing patient2 in whom a diagnosis of proven or suspected leukodystrophy has been made

c. Under 16 years (0 - 15 years, 364 days)

d. MR imaging has been performed

  1. A new patient is defined as a patient that has newly presented or been newly referred to the paediatric neurology/neurodisability service.
  2. A pre-existing patient is one that has been seen for review during the time of data collection

Exclusion Criteria:

a. Clear evidence of an acquired leukoencephalopathy