Kia ora Elizabeth

  

Thank you for your request under the Official Information Act 1982 (the Act) to the Ministry of Health-Manatū Hauora on 10 September 2025.

 

 “Scope of Request:
Please provide time-series and cross-sectional data from all relevant datasets, including but not limited to:
•       Integrated Data Infrastructure (IDI)
•       Primary Health Organisation (PHO) enrolment and service use data
•       National Minimum Dataset (NMDS)
•       National Non-Admitted Patient Collection (NNPAC)
•       Mortality Collection
•       National Collections for Cancer, Rare Disorders, and Genetic Conditions
•       Laboratory and Pharmaceutical Claims Data
•       Hospital Discharge Data
•       Outpatient and Specialist Services Data

Required Disaggregation:
Please disaggregate all data by:
•       Ethnicity, using total response categories:
o       Māori
o       Pacific peoples (including sub-ethnic groups and Pacific peoples who also identify as Māori where possible)
o       Non-Māori, Non-Pacific
•       Age group
•       Sex
•       Region/DHB of residence (historical) and current Te Whatu Ora region
•       Socioeconomic status (NZDep or equivalent)
•       Disorder type and ICD code
•       Service type and frequency of use
•       Health outcomes (e.g., hospitalisation, mortality, treatment access)

Time Period:
Please include all available data from 2000 to 2025, noting any gaps in data availability or quality.” 
  

  

Your request asks for information which is more closely connected with the functions of Health New Zealand (Te Whatu Ora). For this reason, the Ministry has decided to transfer your request to Health New Zealand under section 14(b)(ii) of the Act. You can expect a response from their agency in due course. Their contact email is: [email address]

 

The part of your request relating to " Integrated Data Infrastructure (IDI)"  is more closely connected with the functions of Statistics New Zealand. For this reason, the Ministry has decided to transfer your request to Statistics New Zealand under section 14(b)(ii) of the Act. You can expect a response from their agency in due course. Their contact email is: [email address]

 

    

Under section 28(3) of the Act you have the right to ask the Ombudsman to review any decisions made under this request. The Ombudsman may be contacted by email at: [email address] or by calling 0800 802 602. 



Ngā mihi 

  

OIA Services Team

Ministry of Health  | Manatū Hauora 



From: Elizabeth Kirkpatrick <[FYI request #32277 email]>
Sent: Wednesday, 10 September 2025 15:20
To: OIA Requests <[email address]>
Subject: Official Information request - Data on Rare Disorder Prevalence & Characteristics in NZ
 
Dear Ministry of Health,

I am writing to formally request access to all available data on people in Aotearoa New Zealand diagnosed with one or more of the 7,000 rare disorders currently coded in the New Zealand health system.

Scope of Request:
Please provide time-series and cross-sectional data from all relevant datasets, including but not limited to:
•       Integrated Data Infrastructure (IDI)
•       Primary Health Organisation (PHO) enrolment and service use data
•       National Minimum Dataset (NMDS)
•       National Non-Admitted Patient Collection (NNPAC)
•       Mortality Collection
•       National Collections for Cancer, Rare Disorders, and Genetic Conditions
•       Laboratory and Pharmaceutical Claims Data
•       Hospital Discharge Data
•       Outpatient and Specialist Services Data

Required Disaggregation:
Please disaggregate all data by:
•       Ethnicity, using total response categories:
o       Māori
o       Pacific peoples (including sub-ethnic groups and Pacific peoples who also identify as Māori where possible)
o       Non-Māori, Non-Pacific
•       Age group
•       Sex
•       Region/DHB of residence (historical) and current Te Whatu Ora region
•       Socioeconomic status (NZDep or equivalent)
•       Disorder type and ICD code
•       Service type and frequency of use
•       Health outcomes (e.g., hospitalisation, mortality, treatment access)

Time Period:
Please include all available data from 2000 to 2025, noting any gaps in data availability or quality.

Additional Notes:
If any datasets require secure access via the IDI or Data Lab, please advise on the appropriate process and approvals. If metadata or data dictionaries are available for rare disorder coding, please include these, along with a list of which Orphanet-coded disorders are currently recognised in New Zealand datasets.

Yours faithfully,
Elizabeth Kirkpatrick

-------------------------------------------------------------------

This is an Official Information request made via the FYI website.

Please use this email address for all replies to this request:
[FYI request #32277 email]

Is [Ministry of Health request email] the wrong address for Official Information requests to Ministry of Health? If so, please contact us using this form:
https://aus01.safelinks.protection.outlook.com/?url=https%3A%2F%2Ffyi.org.nz%2Fchange_request%2Fnew%3Fbody%3Dministry_of_health&data=05%7C02%7Coiagr%40health.govt.nz%7C576a7c96982e42eca7f308ddf019414d%7C23cec7246d204bd19fe9dc4447edd1fa%7C0%7C0%7C638930713472613242%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C40000%7C%7C%7C&sdata=SLw%2FwqF%2BLIjlQ1D7zKAxUjABtbQTqjJv4vXGTOYlkv4%3D&reserved=0

Disclaimer: This message and any reply that you make will be published on the internet. Our privacy and copyright policies:
https://aus01.safelinks.protection.outlook.com/?url=https%3A%2F%2Ffyi.org.nz%2Fhelp%2Fofficers&data=05%7C02%7Coiagr%40health.govt.nz%7C576a7c96982e42eca7f308ddf019414d%7C23cec7246d204bd19fe9dc4447edd1fa%7C0%7C0%7C638930713472652673%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C40000%7C%7C%7C&sdata=5qK0F0vQSZml9fZtE%2FUDyDAYQloLCA4V%2F6jkkdsNRlE%3D&reserved=0

If you find this service useful as an Official Information officer, please ask your web manager to link to us from your organisation's OIA or LGOIMA page.


-------------------------------------------------------------------