How to make a data request
Many questions can be answered through NCRI publications or interactive visualisation tools. If the information you require is not available by these mechanisms, data can be requested by the following process.
1. Complete the online application form
It is helpful if you can clearly specify if you would like to request aggregate (summary) or individual level data, and whether these will be anonymised or pseudonymised The requirements differ for each type.
NCRI’s data dictionary gives further information on the data we collect.
More information on the types of data you can request
Summary data on a specific cancer type or subgroup of patients
For tables of summary or aggregated data (number of cancers diagnosed, incidence rates or survival estimates), first check to see if it is possible to generate the data using the interactive visualisation tools.
For data on a specific cancer type or subgroup of cases which is not available in the interactive visualisation tool, submit a custom request using this form. Provide as much detail as possible when making the request.
NCRI should be able to provide summary tables of aggregated data by email. Due to the sensitive nature of the data and possible risk of identifiability, it is NCRI’s policy not to provide precise numbers (suppress) where there are fewer than five cancer cases/records.
Individual level data
Researchers associated with a recognised research or clinical institution can request datasets of individual level data.
Depending on the specific data items requested, a dataset may be considered:
- Anonymised: "Anonymisation" of data means processing it with the aim of irreversibly preventing the identification of the individual to whom it relates. Data can be considered effectively and sufficiently anonymised if it does not relate to an identified or identifiable natural person or where it has been rendered anonymous in such a manner that the data subject is not or no longer identifiable.
- Pseudonymised: “Pseudonymisation" of data means replacing any identifying characteristics of data with a pseudonym, or, in other words, a value which does not allow the data subject to be directly identified.
For all types of individual level datasets:
- Complete the Data Request Form and submit the supporting documentation.
- Provide proof of ethics committee approval, or a letter from the ethics committee stating why approval was not required, or not applicable in the case.
- The request will be reviewed by the NCRI Data Request Approval Committee (DRAC).
Please note that requests for datasets other than anonymised will also require:
- Either patient consent or a consent declaration from the Health Research Consent Declaration Committee
- A Data Sharing Agreement to be signed by NCRI and the institution where you are based
2. Contact
NCRI’s research and analysis team will make contact to go through the details and next steps. This can include discussions on necessary approvals needed for the requested dataset.
3. Review
DRAC will review the data request. Anonymised aggregated data without small numbers do not require committee appraisal and can be provided relatively quickly, or are available on this website.
4. Approval
Once the request is approved, a “declaration by requester“ form will be sent for a signature. A data sharing agreement will also be required. unless the data is anonymised.
5. Preparation
The dataset and a data dictionary will be prepared.
6. Access
Access will be given to the requested dataset using secure data sharing methods.