Description
The Northern Ireland Cancer Registry (NICR) located in the Centre for Public Health, Queen's University Belfast is funded by the Public Health Agency for Northern Ireland. The Registry is responsible for the production of Official Statistics on cancer incidence, prevalence and survival in Northern Ireland and provides evidence to help inform decision making about cancer services.The NICR has collected data on all cancer diagnoses (including non-melanoma skin cancers) from 1993. The quality and completeness of the data held by the NICR is regularly assessed with data quality indicators (performance indicators) submitted to the United Kingdom Association of Cancer Registries annually on the timeliness, quality and completeness of data (http://www.qub.ac.uk/research-centres/nicr/CancerInformation/data-quality/ ). In addition to cancer diagnosis the NICR also contains information on some pre-malignant conditions.
One of the primary roles of the NICR is to provide a basis for undertaking population-based research with the aim of improving the experience of patients and reducing the burden of cancer. The cancer registry helps answer research questions by:
Undertaking analysis of routine registry data to answer a specific question: The cancer registry holds data on patient demographic characteristics, disease characteristics, clinical information including co-morbidities and treatment.
Linking to other datasets: The registry data can be linked to other data sources to allow follow-up of cancer patients. Previous examples include linkage to the Honest Broker Service and Northern Ireland Biobank.
Providing a sampling frame: The registry holds details on all patients known to have a diagnosis of cancer in Northern Ireland and has up-to-date information on their vital status. The registry can therefore help researchers establish population-based sampling frames for research studies, including surveys.
All research must be undertaken in compliance with the NICR Confidentiality and Data Protection Policy. The NICR has ethical approval from the Office for Research Ethics Committee Northern Ireland (OREC-NI). This covers the collection of data on cancer patients and patients with certain pre-malignant conditions for official statistics, audit and research purposes. Separate ethical approval is still required for certain research projects.
We have now established a NICR Research Access Policy which outlines how clinicians, academic researchers and commercial companies can utilise the NICR for research purposes. As part of this new policy document we are establishing a NICR Research Advisory Group. The purpose of this advisory group is to review all full research applications to the NICR to determine if they:
1. Use scientifically robust methodology
2. Are covered by the existing NICR ethical approval and/or GDPR regulations
3. Would be able to be completed by the NICR within the research study timeframe taking into account personnel and accommodation resourcing.
4. Have an appropriate research team with sufficient experience in epidemiological research and statistical analysis.
This NICR Research Advisory Group will have representation from NICR staff, Northern Ireland-based researchers and clinicians. All applications will be reviewed by at least two Advisory Group members (in addition to NICR staff) within a timeline of 10 working days. The panel will also meet every 6 months to review research applications submitted to the NICR, progress of research investigations, funding and the breadth and scope of applications. All applications MUST be kept strictly confidential and panel members MUST NOT discuss applications outside of the formal advisory group meetings.
| Period | 01 Jan 2019 → … |
|---|---|
| Held at | Centre for Public Health |
| Degree of Recognition | Regional |