White Matter Disorders

Research area: Clinical Sciences > Neuroscience | Status: Active

The Australian Leukodystrophy Clinical and Research Program.

This program aims to provide more diagnoses, improved experiences and better outcomes for families affected by leukodystrophies and white matter disorders through research and targeted precision treatments.

This program aims to provide more diagnoses, improved experiences and better outcomes for families affected by leukodystrophies and white matter disorders through research and targeted precision treatments.

Overview

This program is involved in multiple research studies that are open to all individuals with a diagnosed or undiagnosed leukodystrophy, along with other conditions affecting the white matter of the brain. Research studies include a patient registry, natural history studies, and clinical trials for specific leukodystrophies. Undiagnosed patients may be able to access further clinical or research genomic testing through our program. 

The program is a collaboration between medical research institutes, hospitals and universities around Australia including: the Royal Children’s Hospital, the Murdoch Children’s Research Institute, the University of Queensland, the University of New South Wales and the Women’s and Children’s Hospital (South Australia). The advocacy of the Damiani family and the Mission Massimo Foundation made the program possible.

It is funded through the Australian Federal Government Medical Research Future Fund (MRFF) and is administered by Australian Genomics.

We also collaborate with international experts through the Global Leukodystrophy Initiative.

Purpose

With our White Matter Disorders clinic at the Royal Children’s Hospital and innovative research programs, our mission is to ensure that every family affected by leukodystrophy has the support and resources needed to navigate the various diagnostic and therapeutic options available.

Information for participants

What’s involved

This will depend on whether you/your child has a diagnosis and what research study you are interested in. Please register below and we will contact you to discuss further. 

Get involved

Who can take part?

  • Children and adults with a leukodystrophy or white matter disorder
  • Living in Australia

Complete your details to register your interest in the study.

Register your interest

Contact us

Australian Leukodystrophy Clinical and Research Program
Murdoch Children's Research Institute
The Royal Children's Hospital
50 Flemington Road
Parkville VIC 3052
Australia

 
child in hospital

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