FightMND Scientific Seminar Series - October 2023

MND disease registries will help accelerate discovery through providing natural history data, with trial patients being able to be digitally matched to historical controls. It will be important to have well-managed and curated registries as more therapies come into the early testing phase, targeting multiple pathways in the neurodegenerative process. MiNDAUS and SALSA are two of the registry projects being undertaken in Australia. MiNDAUS is a patient-centric database which has the potential to be a real-time clinical tool. SALSA integrates longitudinal collection of clinical data with biological samples from individuals with ALS in Australia. Together, these registries are a powerful resource for researchers in Australia, and capture a snapshot of MND in the Australian population.