Introduction
The National Cancer Registration Registration and Analysis Service (NCRAS) provides near-real time, cost-effective, comprehensive, quality-assured data services covering the entire cancer pathway on all patients in England. The service collects data about, and then follows-up, all 500,000 patients diagnosed with cancer in England each year, over 300,000 of which are new diagnoses of invasive cancer.
NCRAS builds a longitudinal, health-care event-based linked dataset on every cancer patient. It creates a data curation and linkage service that can be used to identify patients with a diagnosis of cancer. We provide expert analysis and interpretation of the data and it is used as a source of intelligence for patients, clinicians, public health, health-care performance, basic and applied research, and commissioning and industrial partners.
What data are collected?
We collect data on all tumours (with the exception of benign tumours outside the central nervous system) diagnosed each year in England. NCRAS receives about 25 million records annually in order to register these cancers.
These records are submitted by 162 health care providers, which incorporate around 2,000 multidisciplinary teams (MDTs). As cancer care is often delivered at different hospitals, information may relate to patient episodes at many organisations, which can introduce inconsistencies in the incoming data. The Cancer Registration Officers will examine all data sources and, if necessary, seek additional source information from primary or secondary care via correspondence or direct interrogation of hospital radiology or electronic health records via remote secure access.
We collect data from multiple sources on people diagnosed with or a condition that could lead to cancer including:
- pathology laboratory reports
- oncology records
- diagnostic imaging reports
- treatment records
- genomics laboratory reports
- hospital activity records
- Multi-Disciplinary Team (MDT) meeting records
- cancer management systems
- patient administration systems
- clinical cancer audits
- screening services
- death certificates (from the Office for National Statistics)
- hospices
- GPs
- community prescribing services
Datasets curated by NCRAS:
Analysis and outputs
Our analysis teams provide expert analysis and interpretation of the data we collect, to understand the frequency, nature, cause and outcome often working in partnership with academic and third-sector colleagues.
As a core part of its remit NCRAS produces a variety of reports and publications using cancer registration data, including national statistics, peer-reviewed articles in scientific journals, data reports, data tables, and cancer information tools. The team has authored over 200 peer reviewed articles (link to journal library) using cancer registration data.
In a typical year NCRAS releases outputs and data in a range of different formats:
- scientific papers
- reports/spreadsheets/data-packs/blogs
- Be Clear on Cancer metric summaries
- dashboards/ public data releases
- official statistics
Find out more about the NDRS outputs and publications on the 'data' section of this website.
Award winning 'Routes to Diagnosis' project
We developed the award-winning Routes to Diagnosis project which significantly changed healthcare policy and commissioning of cancer services by describing and quantifying the different patient routes or pathways to a cancer diagnosis. This has been expanded to now include breakdowns by Cancer Alliance as well as routes for children and teenagers. It is maintained annually.
Accessing NCRAS data
The data that NCRAS collects and analyses can only be used for health care purposes that will benefit individuals and society; our absolute responsibility is to make sure that every individual patient’s confidentiality is protected. Access to the health records of people who have cancer is a great privilege, and everyone who works in the NDRS takes great care when handling this data. Personal data that can identify someone is only used when absolutely necessary – such as when the NHS wants to send a questionnaire to patients to get a better understanding of the effects of treatment.
For almost all the research work conducted by the registration service and for the work organisations like cancer charities or academics carry out, the data we provide is anonymised or de-personalised before it is released. For more information on accessing NDRS data please see the DARS page.
Last edited: 4 August 2023 3:52 pm
