The National Cancer Registry Ireland

Conditions of use of National Cancer Registry Data

Data at the level of individual records are highly sensitive and have the potential to disclose confidential information on individuals. For this reason, the National Cancer Registry imposes a number of conditions on the release of such data.

1. Individual-level data (other than non-identifiable individual-level data as already downloadable from the NCRI website) will be provided only when no alternative method of investigation is available, and if, in the view of the Director, the benefits to accrue from the data use outweigh any potential risks.
2. The data user must work within a recognised institution of some standing (e.g. third level institution, health service organisation). All individuals who will have access to the data must be named.
3. The purposes for which the data are to be used must be clearly set out. The data are not to be used for any other purpose. The data, and all paper and electronic copies, will be destroyed before an agreed date.
4. Identifying data-patient name, house address, medical record, GMS, PPS numbers-will not be given without patient consent.
5. Information with the potential to identify individuals will be grouped to prevent identification. For instance, age will normally be given in five-year bands, date of diagnosis and date of death by year of occurrence.
6. Information which could identify a hospital or health care professional will normally require consent from the hospital or individual.
7. The data must not be used to identify, or attempt to identify, any individual, family or dwelling, or to contact any patient or their family, and may not be published in a way which would allow any individual, family or dwelling to be identified, either directly or by linkage with other data.
8. The National Cancer Registry will be informed, and will have to give consent, for the data to be linked with any other databases.
9. The National Cancer Registry will be sent a final draft of any publication^* or report based on the data, and will have the right to have any analysis breaching the above conditions removed or modified.
10. Users of the data must ensure that, in complying with the above conditions, they also observe the relevant provisions of the Data Protection Acts and the Freedom of Information Act.
11. The National Cancer Registry may record the details of the data you download, and any personal information you volunteer, as described in its Privacy Statement.

Indicate acceptance by selecting the Accept button below. If you are not willing to be bound by all the conditions, click on the Decline button.

Further information on the provision of data by the National Cancer Registry can be found in this document on the re-use of information in the public sector.

Disclaimer: ED coded data

ED codes are assigned by the Registry based on the address provided by the hospital and two address databases provided by third parties. While we make every effort to ensure that assignment of EDs is correct, we cannot guarantee that these external data sources are completely free of error. We recommend that, for studies where mis-assignment of small numbers of cases might be critical, the data should be discussed with our geocoding team.

* Publication includes: unrestricted circulation of a document, posting on a website; production in any format which would be subject to Freedom of Information legislation.