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Australian Leukodystrophy Registry

Information

The Australian Leukodystrophy Registry is led by the Massimo’s Mission Leukodystrophy Program at the Murdoch Children’s Research Institute. The purpose of the registry is to collect some basic information on individuals with a leukodystrophy or white matter condition and to unite people who are interested in taking part in leukodystrophy research. The information collected will be used to help advance scientific knowledge to inform future clinical trials.

Registry LocationAustralia
Registry ParticipationVoluntary
Registry Contact

Australian Leukodystrophy Registry Coordinator

E: leukonet@mcri.edu.au

T: 03 8341 6382

Adding New Patients to Registry

The database is open to anyone affect by a leukodystrophy or white matter condition. The data obtained is held securely and confidentially. To participate please contact the registry coordinator or complete the following survey:

https://redcap.mcri.edu.au/surveys/?s=33YKYRRMWE

Please see the website for more information

Massimo’s Mission Leukodystrophy Program

 

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