The Northern and Yorkshire Cancer Registry and Information Service (NYCRIS), based in Leeds, is responsible for the collection, analysis, interpretation and dissemination of population-based cancer data. It also has a collaborative research programme. The population covered by NYCRIS (the old Northern and Yorkshire NHS region) is approximately 6.7 million, and maps to the four cancer networks shown on the cover of this leaflet -
NCN - Northern Cancer Network
CCA - Cancer Care alliance of Teesside, South Durham & North Yorkshire
HYC - Humber and Yorkshire Coast
YCN - Yorkshire Cancer Network
Cancer Registries have a long term role in monitoring trends in the patterns of cancer in the population. The twelve UK Cancer Registries have been collecting cancer data for more than 40 years on every new diagnosis of cancer occurring in their populations. This information is co-ordinated nationally for England and Wales by the Office for National Statistics (ONS).
The Current Context
Timely, reliable, comparable cancer data and information are needed in the modern context for a whole range of purposes, including the provision of monitoring information in support of the NHS Cancer Plan (published September 2000). The organisational basis of the NHS, and its geographical boundaries, have undergone fundamental changes since registries were first established. Since, however, they are based on populations rather than NHS structures, they have retained the ability to respond to changing needs for cancer data and information.
Cancer registries must now modernise their processes. They must ensure that they are capable of receiving and processing the cancer registry data items electronically from multiple sources by December 2006. NYCRIS currently has a reputation for good quality data. The key challenge is to ensure that, in moving to electronic data processing, this quality can be sustained.
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, Cytology and Haematology services
Specialist tumour registers
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.
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
O01 Hydatidiform mole
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.
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. Both protocols are available via the NYCRIS website
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 on 0113 392 4182, or
NYCRIS also provides information as follows:
• In response to individual requests from the genetic counselling services
• In published reports.
• Via the internet (www.nycris.org.uk) where all NYCRIS published reports can be accessed.
• Via epidemiological research findings published in peer reviewed journals and at scientific conferences.
• Via the Cancer Information Service (CIS)
Cancer Information Service (CIS)
The Cancer Information Service (CIS) has been available at NYCRIS since 2003. It is a web-based analytical tool, only available over NHSnet. It provides common analyses relating to incidence, mortality and survival and can be viewed by: 5 year age-group, sex, cancer site, health and administrative geographies. Further information on the background and ongoing developments of this system are available on our website.
Users must request a login for the system. Application forms can be requested directly from NYCRIS or downloaded from our website. Our website also contains examples of the kinds of analyses which can be performed using CIS. Data can also be downloaded as CSV files into Excel or saved as PDFs.
If you want to include NYCRIS data in any published reports, please reference us as the source and send us a copy or extract.
Copyright© NYCRIS 2006
Northern & Yorkshire Cancer Registry & Information Service