Tools and infrastructure

Clinical and epidemiological databases

A number of local clinical databases and registries are available for access and collaboration for MS researchers in Australia. These registries are geared towards encouraging the reuse or reanalysis of existing data, in order to obtain maximum value of the original research investment. New submissions or updates on listed resources are welcomed via the link above.

Name Location Resource availability and details Accessibility and cost
BioGrid National, online Biogrid is an online data sharing platform that securely links across institutions, helping researchers to find and reuse large-scale data. Data is available to Australian researchers. Services are provided at low cost or via collaboration.
Research Data Australia  National, online Research Data Australia is an online platform helping researchers find, access, and reuse data for research from research organisations, government agencies, and institutions. Collections include Bioplatforms Australia and the Australian Phenomics Network. Available to Australian researchers. Much of the data is immediately accessible online via publishing partners and free to use (subject to any licence conditions).
Australian MS Longitudinal Study (AMSLS)  National, coordinated in Tasmania The AMSLS is an ongoing research project designed to provide data of practical use for improving the lives of Australians living with MS. Researchers can collaborate with AMSLS investigators to access existing survey data or to include questions in future surveys. Data and surveys available via collaboration.
MSBase  International, coordinated in Victoria MSBase is an ongoing, clinical, longitudinal observational registry dedicated to sharing, tracking and evaluating outcomes data in MS. Membership is free to Australian and international researchers. Data access available to all members.
Paediatric MS Registry National, coordinated in New South Wales Coordinated by investigators at the Kids Research Institute in Westmead, Sydney, the Paediatric MS Registry collates clinical and biological data for children with MS. Access via collaboration with chief investigators.
Australian MS Autologous Haematopoietic Stem Cell Transplant (AHSCT) Registry  National, coordinated in New South Wales National registry collecting data on the effects of treatment with AHSCT for MS, including patient outcomes and long term prognosis following this procedure. Not currently available for external access, but will be open for external collaboration in the future.
Population Health Research Network (PHRN) National The PHRN provides researchers with the ability to link de-identified population health data from a range of health data sets. Includes units within NSW, ACT, VIC, WA, SA, TAS, QLD. Data access via application by Australian researchers. Costs apply for linkage, coding or extraction requests.
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Clinical and epidemiological databases