Registration
Cancer registration has been conducted in parts of the UK since 1929 with national coverage since 1962. A network of cancer registries across the UK collects population-based data on the incidence, mortality and survival from cancer, thus avoiding the biases of hospital based registries. Data for England & Wales are collated centrally by the Office for National Statistics to provide national figures on cancer incidence on an annual basis.
The Eastern Cancer Registry and Information Centre covers Norfolk, Suffolk and Cambridgeshire (from 1989), Bedfordshire (from 1996) and Essex and Hertfordshire (from 2006). Our current regional population is approximately 5.5 million. We are co-terminus with the East of England government office (Go-East) and the Eastern Region Public Health Observatory (ERPHO).
Each registry is population based so that the information provided gives an unbiased profile of cancer across the whole catchment population. Data is collected on all patients whether they are treated in hospitals (acute, long stay, hospice or private) or by their general practitioners. Information on patient deaths are provided through the national death certification scheme and supplied via the Registrar General and the NHS Central Register.
Cancer registries are essential to the implementation of the NHS Cancer Plan and the Cancer Reform Strategy. Reliable population based information on cancer incidence, prevalence, mortality and survival rates are needed to monitor the Government's target of reducing the cancer death rate by 20% by 2010. Information from cancer registries is essential for:
- Prevention: Population based incidence data are required to monitor the achievement of targets for preventing cancer
- Early detection: Population based data are required to monitor the effectiveness of national screening programmes and to inform the design of new programmes, e.g. screening for colorectal cancer. Using the data that we store, we are able to respond to requests by clinical geneticists to monitor high risk individuals for early signs of cancer.
- Improving access to specialist care: Population based data are required to monitor intervals between referral and treatment of cancer patients.
- Improving treatment: Treatment patterns need to be monitored to audit adherence to guidelines, effectiveness of interventions and outcomes. Data from registries can identify the scope for NHS intervention, eg deprivation and cancer.
- Improving the experience of care: Access to specialist palliative care and place of death should be monitored to ensure optimal access and choice for patients
- Research and development: Population based data can provide essential information for research into the causes and effects of cancer (e.g. studies of the incidence of cancer in different occupational groups; studies of multiple cancers in individual patients/families) and to assess changes over time.
- Costs of cancer: Population based data can provide valuable information on the costs and cost-effectiveness of cancer care.
- Reducing inequalities trends in incidence, prevalence, mortality and survival rates are needed to enable measures to be targeted to reduce inequalities in health and to measure progress.
- Cancer notification became mandatory for the NHS in 1993 and all regional cancer registries collect information routinely from all relevant hospitals and laboratories within their region. The following flow chart summarises the data collection process and interactions between participating units.
Data on new cancers (incidence) are collected by and recorded by the registration staff of ECRIC. The data recorded is in the following categories:
- Patient details (name, NHS number, DOB, postcode, address)
- Details of the tumour (ICD code, stage, TNM )
- Treatment (radio, chemo, surgery etc)
- Where treatments take place
- Vital status (whether a patient is dead or alive)
- Cause of death
The WHO international cancer topography coding system of ICD10 is currently in use, however, from 2010 we will be converting into ICD-03.