What is NYCRIS ?

Northern and Yorkshire Cancer Registry and Information Service

NYCRIS is one of eleven UK Cancer Registries, which have a long term role in monitoring trends in the patterns of cancer in the population. Cancer registries in the UK have been collecting data for more than 40 years on every new diagnosis of cancer occurring in their populations. This information is co-ordinated nationally for England by the Office for National Statistics (ONS) - link to health & care publications.

NYCRIS Region

NYCRIS was established in 1997 from a merger between the former Yorkshire and Northern cancer registries (excluding a small area of South Cumbria) and is based in Leeds. The service is responsible for the collection, analysis, interpretation and dissemination of population-based cancer data. It also has a collaborative research programme, information requests service and genetic enquiry service in place. NYCRIS covers a total population of approximately 6.6 million and registers information on over 50,000 new cancer patients annually. Included within the NYCRIS area are:

Government Offices

Administative Geographies - made up of Counties, Local/ Unitary Authorities, Wards and Parishes
North East (GONE) - Yorkshire and the Humber (GOYH) - North West (GONW)

Strategic Health Authorities

Health Geographies - see also Primary Care Trusts and Cancer Networks
North East (NESHA) - Yorkshire and The Humber (YHSHA) - North West (NWSHA)

Primary Care Trusts (PCTs)

Commissioning trusts (23 in NYCRIS region), which provide primary care services and commission secondary care services
2006 Health geographies - List of PCTs in NYCRIS region

Hospital Foundation Trusts / NHS Acute Trusts

Commissioned trusts, which provide secondary care services
List of NHS Acute Trusts (including Foundation Trusts) in England - Map of NHS Foundation Trusts

Cancer Networks

Organisational model for cancer services (to implement the Cancer Plan) - linking together the organisations that provide care for people with cancer
Humber and Yorkshire Coast (HYCCN) - North of England (NECN) - Yorkshire Cancer Network (YCN)

Public Health Observatories (PHOs)

Provide public health intelligence services within their regions. PHOs support the work of public health professionals, local authorities and providers of healthcare. Observatories collect and analyse health data from a range of sources locally, nationally and regionally.
North East (NEPHO) - Yorkshire & Humber (YHPHO)

Screening Quality Assurance Reference Centres (QARCs)

Maintain minimum standards and to improve the performance of all aspects of screening in order to ensure that women have access to high quality screening services wherever they live.
North East Yorkshire and the Humber QARC - North West QARC

All these organisations represent key regional stakeholders. Registration data for the South Yorkshire area are provided to NYCRIS from the Trent Cancer Registry in order to provide complete coverage of YH SHA while registration data for North Cumbria are provided by NYCRIS to the North West Cancer Intelligence Service to complete coverage of the NW SHA.

NYCRIS has a national and international reputation for the quality and breadth of its historic dataset, its routine outputs and for the extent of its research programme. The NYCRIS ‘brand’ is recognised amongst those within the cancer field as providing excellent, quality assured and robust data, enhanced by a strong and developing research function with the University of Leeds and Cancer Research UK.

Data Sources

Cancer registries maximise their case ascertainment and dataset completeness by obtaining data from multiple sources and then matching and merging them as required. NYCRIS uses a wide range of data sources:

Histopathology and Haematology services, Medical records, Radiotherapy departments, Hospices, Independent hospitals, Specialist tumour registers, Screening services, Death certificates, GPs and other UK Cancer Registries

As NYCRIS works to establish a more automated registration process, other new sources of electronically available data will be accessed. NYCRIS has already begun to use the National Strategic Tracing Service (NSTS) and the Cancer Waiting Times (CWT) database. Other future data sources are likely to be provided via NHS Connecting for Health, such as electronic patient records and data via the Secondary Uses Service.

Diseases Registered

NYCRIS continues to collect data relating to all registerable conditions, defined below, using the ICD10 classification:

  • C00-C97 All malignant neoplasms
  • D00-D09 All in situ neoplasms
  • D32.0 Benign neoplasm of cerebral meninges
  • D33 Benign neoplasm of brain & other CNS
  • D35.2-D35.4 Benign neoplasm of pituitary gland, craniopharyngeal duct and pineal gland
  • D37-D48 Neoplasms of uncertain behaviour

Cancers are registered according to worldwide standards - guidelines and further information can be found at the the following:

Collaborative Working

NYCRIS works collaboratively with other registries, Public Health Observatories (PHOs) and external researchers on shared projects relating to analysis and research. Collaborative working with our data providers also plays a large part in changing our registration processes. Other areas of collaboration include recruitment, education and training.

Confidentiality

NYCRIS is included within the Leeds Teaching Hospitals NHS Trust's overall Data Protection Registration for the purposes of Research and Statistical Analysis (Cancer). NYCRIS has protocols encompassing acquisition, handling, processing, storage and release of data. Only the minimum identifiable information necessary to satisfy the purpose will be released by NYCRIS. Where information is aggregated or anonymised, care is taken to ensure that individuals cannot be identified (for example where the dataset may be for a small geographical area, or rare cancer site). Patient-identifiable data are released in accordance with the United Kingdom Association of Cancer Registries’ (UKACR) Policy on Release of Identifiable Information – Disclosure of Identifiable Data by Cancer Registries approved by the national Patient Information Advisory Group (PIAG). NYCRIS also works to a strict policy on the release of other identifiable data.

Information & Analysis Service

NYCRIS offers an ad-hoc information request service. This processes an average of 350 information requests each year. To request information please contact the Information and Analysis team or telephone 0113 206 8846 to discuss your requirements. NYCRIS also provides information as follows:

If you want to include NYCRIS data in any published reports, please reference us as the source and send us a copy or extract.