National Cancer Registry Ireland (NCRI)

Data Collection Type
National data collections of health and social care in Ireland
Organisation

National Cancer Registry Ireland (NCRI) in conjunction with the Department of Health.

Year established

1991 (set up).

1994 (began nationwide cancer registration).

Data collected for years of incidence 1994 onwards.

Statement of purpose

The purpose of the National Cancer Registry is;

- to identify, collect, classify, record, store and analyse information relating to the incidence and prevalence of cancer and related tumours in Ireland;
- to collect, classify, record and store information in relation to each newly diagnosed individual cancer patient and in relation to each tumour which occurs;
- to promote and facilitate the use of the data thus collected in approved research projects and in the planning and management of services;
- to publish an annual report based on the activities of the Registry;
- To furnish advice, information and assistance in relation to any aspect of such service to the Minister.

In scope:

1. The date of incidence is after the 01/01/1994
2. Resident in the Republic of Ireland - The residence is defined as the place the person has lived for the previous twelve months. The purpose of recording residence is that the rate of tumour incidence can be related to a specific population
3. The list of registerable tumours are as follows:
i. All tumours described as "malignant"(/3), "in situ"(/2), "of uncertain behaviour"(/1) or "borderline malignancy"(/1) listed in the World Health Organisation (WHO) ICD-O Manual
ii. All intracranial (inside the dome of the skull) and spinal cord tumours. This includes benign tumours of the Central Nervous System, meninges, cranial nerves (e.g. acoustic neuroma), pituitary gland and pineal gland.
4. In some cases, subsequent tumours may be diagnosed in someone who is already known to have cancer and these tumours are registered if they meet the NCRI’s registration criteria.

Out of scope:

1. Tumours diagnosed prior to 01/01/1994
2. Non-residents of Ireland as per the definition above.

Coverage (geographical and temporal)

The National Cancer Registry of Ireland covers the Republic of Ireland.

Collection of population-based incidence data for the entire country commenced in January 1994.

Description/Summary

The National Cancer Registry has been collecting comprehensive information on cancer and related tumours for the resident population of the Republic of Ireland since 1994.

The information collected is used in research into the causes of cancer, in education and information programmes, and in the planning of a national cancer strategy to deliver the best cancer care to the whole population.

Data users

Department of Health, Health Service Executive, hospitals, clinicians, researchers, International Agency for Research on Cancer (IARC), European Cancer Information System, cancer charities, media and patients.

Data content

Information collected includes name, address, sex and date of birth, PPSN, the type and location of the cancer, how advanced the cancer is and the primary treatment received by the patient. The Registry also follows up the numbers dying from their cancer or from other causes.

Data dictionary

The NCRI Data Dictionary was published in March 2022.

https://www.ncri.ie/sites/ncri/files/documents/Data%20Dictionary%20Report%20-%20Final.pdf

National-level identifier variables

PPSN is recorded.
IHI is not available.

Equity stratifiers

Biological sex (not Gender)
Place of residence (not yet in core dataset but routinely used for analyses)
Derived Electoral District (ED) of residence
Derived Small Area of residence
Derived quintiles of Pobal deprivation indices (by ED linkage).

Data collection methodology

The NCRI receives data electronically from the following sources

- Monthly or quarterly electronic feeds from histopathology labs
- Quarterly, biannual or annual
- electronic feeds from radiotherapy units
- Quarterly electronic feed from the Hospital In Patient Enquiry (HIPE) system
- Quarterly electronic feed from the Central Statistics Office (CSO).

Approximately 90% of tumours are created electronically and are followed up manually.

The remainder of tumours are created from paper based sources.

Cancer Data Registrars (CDRs), assigned to hospitals around the country, access a range of data sources to follow up all new cancers and register all relevant patient, tumour and primary treatment details on the NCRI Cancer Registration System (CRS).

The NCRI is provided with all death certificates from the Central Statistics Office (CSO). Tumours initially notified by death certificate (DCI) are followed up with the hospital of death and most tumours are subsequently confirmed from other data sources. Only a small percentage of tumours (

Clinical coding scheme

Tumours are coded using the World Health Organisation (WHO) International Classification of Diseases for Oncology (ICD-O)

- 1994 to 2004 ICD O Version 2
- 2005 to 2011 ICD O Version 3
- 2012 to 2019 ICD O Version 3.1
- 2020 onwards ICD O Version 3.2.

Tumours are staged using the Union for International Cancer Control (UICC) TNM* Classification of Malignant Tumours (*Tumour, Node, Metastases)

- 1994 to 2001/2002 4th edition
- 2002/2003 to 2013 5th edition
- 2014 onwards 7th edition.

For years of incidence 1994 to 2010 (part) treatments are coded using the International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM).

For years of incidence 2010 (part) onwards treatments are coded using Australian Classification of Health Intervention (ACHI) 6th edition.

NCRI reports statistics in International Classification of Diseases 10th edition (ICD-10) modified to take account of the most recent ICD-O behaviour recommendations.
Systematized Nomenclature of Medicine (SNOMED) coding is used by histopathology labs to code tissue specimens. The codes provided by the labs are converted to ICD-O by the NCRI.

Size of national collection

45,000 new tumour records per year are created of which 35k are invasive, or 25k invasive excluding non-melanoma skin cancers.

Publication frequency

Updated incidence statistics are reported on annually in NCRI’s annual statistical report. Figures on the website have not always been updated annually, thus the online figures may differ from the Registry’s published report.

Accessing data

Aggregated statistics through online PDFs of reports, online incidence and survival statistics pages or data requests.

Individual-level data (generally pseudonymised) can be requested, and is subject to relevant review (in relation to Subject Access Request, Freedom of Information, GDPR and other considerations) before any such information is provided.

https://www.ncri.ie/faqs/our-data-how-we-collect-it/how-can-information-be-accessed

Open data portal access

No.

Email contact
Telephone contact