Do you have a leukodystrophy or white matter disorder and would like to join the patient registry?
The Australian Leukodystrophy and White Matter Disorders Registry is a confidential research database of information about people with leukodystrophies and white matter disorders in Australia. Registries are absolutely essential for rare diseases to facilitate better understanding of natural history, collaboration of gene discovery, development of novel treatments and the establishment of clinical trials for patients.
Participants will have the opportunity to contribute to patient surveys, access educational resources and be informed of the latest leukodystrophy research.
If you would like to join, click the sign up button below.
What does participation involve?
1. Collection of medical records
We will collect medical information about you/your child for the registry. We will collect this information from your/your child’s medical records and/or treating team.
2. Sample collection if having genomic testing
We may ask to collect a blood or saliva sample to undertake further testing. Sometimes it is helpful to use other types of samples like a urine sample or a skin biopsy. You do not have to agree to these samples being collected in order to participate in the study.
For detailed study information, you can download the documents below: