For researchers & decision-makers
Turn data into discovery: request access to registry data
De-identified registry data supports research, policy and programme evaluation. It is released only for an approved purpose, under ethics review and a signed agreement.
Request in 6 steps
Simple, guided requests
Access to the registry's de-identified data is straightforward and secure. Follow these steps to submit your request and begin your research or policy work.
Submit supporting documents
For case-level data, the registry team will ask you for:
Research protocol with the National Ethics Committee's authorization
A structured research plan authorized by the National Ethics Committee, and for one facility's data by that facility's ethics committee or ethical authority too.
Proof of funding or institutional support
A grant approval letter, an institutional memo or a partnership confirmation.
Principal investigator's CV (2 pages maximum)
Relevant academic and professional experience of the principal investigator or lead researcher.
All documents must be in PDF format. Incomplete applications may delay the review.
What can be released
Three release levels
Aggregate tables
Counts and rates by region, age group, stage or period, with counts below 5 suppressed. No ethics approval is needed.
De-identified records for research
One row per case, with direct identifiers removed. Requires the National Ethics Committee's authorization and a signed data use agreement.
Regulatory submissions
Case-level data for a regulatory body, with any additional fields the review approves. Requires the same evidence.
Know the rules before you request
Responsible access starts with clear policy
All access to registry data must respect ethical standards, patient privacy and public health priorities. Each request is judged on its purpose, a release contains only the fields a study needs, and every release is recorded.
Your agreement, your responsibility
Access comes with accountability
Before any data is released, applicants accept the registry's data use terms, which set out the legal, ethical and technical responsibilities that come with the data. These terms make sure that all research using registry data upholds integrity and confidentiality.
Approved releases
To be open about how registry data is used, approved releases will be listed here: the organisation, the purpose and the level of data released.
No releases have been published yet.
Data dictionary
A codebook describing every variable that can be released will be published here.
Ready to apply?
The request form takes about ten minutes. The registry team will contact you about the next steps.