Data protection

Who we are and how to contact us

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)

The personal data we collect and how we use it

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:

  • approved research projects;
  • the planning and management of healthcare services, and;
  • providing advice, information and assistance to the Minister for Health.

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).

Who we share data with

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.

Transfers of personal data outside Europe

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

Details of the Privacy Shield agreement can be found on its website: www.privacyshield.gov

Retention of data

We only retain personal data for as long as is necessary to fulfil the research and statistical purposes for which it is recorded.

Your Data Protection rights

  • You have the right to be provided on request with a copy of your personal data. For health related data requests, we are obliged to consult with the appropriate health practitioner (normally, your treating clinician) to ensure providing the data to you will not result in serious harm to your physical or mental health.
  • You have the right to rectification of inaccurate data we may have recorded about you.
  • You have the right to the erasure of your data (“right to be forgotten”) which we no longer have justification for recording.
  • You have the right to object to processing of your data which is being done by the NCRI in the public interest or in the exercise of our official authority.
  • You have the right to restrict the processing of your personal data when:

the basis for its processing is in dispute;
its accuracy is in dispute;
we cannot establish a lawful basis for its processing, but you do not wish it to be erased;
we no longer need your data, but you need it for the establishment, exercise, or defence of legal claims;
you object, where applicable, to our processing of your data, pending verification of whether your interests override our legitimate grounds.

You have the right to be provided with a copy of your data which the NCRI is processing on the basis of a contract to which you are party, or your consent. Your data must be provided to you in machine readable format, or transferred directly to another data controller (“data portability”). In general, this right does not apply to your data which we collect for research purposes.

If you are not satisfied with our responses or are otherwise concerned with how we process your personal data, you also have the right to make a complaint to the Data Protection Commissioner - www.dataprotection.ie

Building 6800
Cork Airport Business Park
Kinsale Road, Cork T12 CDF7
Email Contact us here
Tel: +353 (0) 21 4318014
Fax: +353 (0) 21 4318016

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