Research Projects

Our research supports the following outcomes:

  • Understanding the impacts of rare diseases on families, clinicians and health services, including health costs
  • Producing unique data through national surveillance into rare, chronic and complex childhood conditions
  • International collaboration through the International Network of Paediatric Surveillance Units (INoPSU)
  • Translation of research evidence into public health policy, clinical policy and advocacy
  • Providing new information to support future research studies
  • Education for clinicians, families and students