GeneSTART

Research, registries & clinical trials
GeneSTART is a rare disease registry collecting patient-reported outcomes and experiences to improve care and research. Families seen at participating New South Wales hospitals can take part after discussing whether the registry is suitable with their clinician.
Illustration of three people beneath a heart, representing community and support.
NSW
rare disease registry collecting patient-reported outcomes and experiences; GeneSTART; Gene Start; Gene2Care; Gene 2 Care; rare disease registry; patient-reported outcomes; patient-reported experiences