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National development of Rare Endocrine Disorder and Familial Endocrine Disorder Registries

12 months
Approved budget:
Emily Walsh
Health issue:
Metabolic and endocrine (excl. diabetes and bone)
Proposal type:
Research Development Award
Lay summary
The research will work in partnership with clinical staff, research staff within CCDHB and nationally to develop the New Zealand Rare Endocrine Disorder (NZ RED) and Familial Endocrine Disorder NZ (FERNZ) registries established in 2018. The NZ RED registry will enrol New Zealanders who have developed rare endocrine disorders including Acromegaly or Cushings disease at any stage throughout their life. The FERNZ registry will enrol participants and their families who either have a confirmed genetic mutation predisposing to endocrine tumours or are strongly suspected to do so on clinical grounds. The primary role of the registry nurse will be to enrol participants into the registry and maintain data at a national level. The nurse will be part of the governance committee, involved in investigator led research and develop the role into patient and peer education as required over time.