Impact of rare disorders in Aotearoa New Zealand
Research project led by Lisa Underwood (COMPASS, University of Auckland)
Lisa Underwood (Tuberous Sclerosis Complex NZ committee member and Senior Research Fellow at the University of Auckland) has received a Lived Experience Research Grant from Ember Innovations to look at the impact of rare disorders in Aotearoa. She is carrying out the project in partnership with Rare Disorders NZ. Here’s a summary of the research:
Collectively, rare disorders affect up to 446 million people worldwide and are associated with widespread impacts on individuals, families, the health system and society. People with rare disorders and their families often need long-term support from early in their life-course until old age.
It’s thought that around 300,000 people in NZ have a rare disorder, but we know very little about them or their families. Lisa will investigate the characteristics of NZ people with rare disorders and their families; the accuracy of health data recording; access to treatment (especially rare disorder medicines) and service use.
The project will use the StatsNZ Integrated Data Infrastructure (IDI), a national database of anonymous information about people and households from NZ government agencies and surveys including the Census, that can be accessed by approved researchers.
