The National Cancer Registry (NCRI) is a public body established to collect data relating to the incidence and prevalence of cancer in Ireland.
We can be contacted at:
National Cancer Registry Ireland,
Building 6800,
Cork Airport Business Park,
Kinsale Road,
Cork
T12 CDF7
Tel: 021 4318014
NCRI’s Data Protection Officer can be contacted at the above address and phone number, or by email at dpo [at] ncri.ie (link sends e-mail)
We collect information about each newly diagnosed individual cancer patient and each tumour which occurs. We also collect relevant information about persons who have not been diagnosed with cancer, for example, participants in cancer screening programmes.
The data we collect is used for:
NCRI obtains data primarily from hospitals and other healthcare service providers. The provision of information in this way and its processing by the NCRI is legally authorised in the public interest under the Healthcare (Provision of Information) Act 1997 as amended by the Data Protection Act 2018, and the National Cancer Registry Board (Establishment) Order (S.I. 19 of 1991).
Data may also be shared with hospitals and other healthcare providers for the monitoring of healthcare outcomes and quality control.
Data is shared with external research organisations for approved research projects. Such projects are subject to a stringent approval process and strict commitments to data protection compliance, in accordance with the Data Protection Act 2018 (Section 36(2)) (Health Research) Regulations 2018.
Where necessary for approved research projects or collaboration with other countries’ cancer registries, we may transfer data to countries outside of the European Economic Area. Some countries to which we transfer data may not have been designated by the European Commission as having at a national level an adequate level of data protection. In these cases, we primarily rely on Commission-approved standard contractual clauses with our partners to safeguard data. For transfers to the United States of America, we may also rely on the Privacy Shield agreement between the Commission and the US Federal Government, if the recipient organisation is registered under the agreement.
Information about the standard contractual clauses may be found on the European Commission’s website: ec.europa.eu/info/law/law-topic/data-protection_en [1]
Details of the Privacy Shield agreement can be found on its website: www.privacyshield.gov [2]
We only retain personal data for as long as is necessary to fulfil the research and statistical purposes for which it is recorded.
The Health Research Data Protection Network's (HRDPN) Practical Guide on Data Protection for Health Researchers [4] is intended to provide general information and understanding of the law to researches to help them understand with plain non-legal language their and their organisation’s role with regard to Data Protection, as well as related responsibilities and requirements.
For more information about how the website stores your personal data in webforms and cookies, please see this page: Website data collection and cookie statement [5].
Links
[1] http://ec.europa.eu/info/law/law-topic/data-protection_en
[2] http://www.privacyshield.gov
[3] http://www.dataprotection.ie
[4] https://ncto.ie/wp-content/uploads/2022/10/HRDPN-Data-Protection-Guide-Document-for-Health-Researchers.July-2022.v1.pdf
[5] https://www.ncri.ie/content/website-data-collection-and-cookie-statement-0