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Genomics England - Secondary Data - PHE/NCRAS

Population Size

72,874

People

Population Size statistic card

Years

1985 - 2022

Years statistic card

Associated BioSamples

DNA

Associated BioSamples statistic card

Geographic coverage

United Kingdom

England

Geographic coverage statistic card

Lead time

1-2 months

Lead time statistic card

Summary

This dataset brings together data from more than 500 local and regional datasets to build a picture of an individual’s treatment from diagnosis. Available for patients diagnosed with Cancer (ICD10 C00-97, D00-48) from 1 January 1995 - 31 December 2019.

Documentation

avpatient: Patient information - demographics and death details. avtumour: Tumour catalogue and characterisation for all patients with registerable tumour. Table's anontumourid is used to link treatment tables also available in NCRAS. One row per tumour, per participant at the point of registration of that cancer/tumour with NCRAS. avtreatment: Tumour linked catalogue of treatments and sites that provided them for all patients with registerable tumour. avimd: The Income Deprivation Domain (IMD table) measures the proportion of the population experiencing deprivation relating to low income. The definition of low income used includes both those people that are out-of-work and those that are in work but who have low earnings. avrtd: Routes to Diagnosis: cancer registration data are combined with Administrative Hospital Episode Statistics data, Cancer Waiting Times daca and data from the cancer screening programmes. Using these datasets cancers registered in England which were diagnosed in 2006 to 2016 are categorised into one of eight Routes to Diagnosis. The methodology is described in detail in the British Journal of Cancer article 'Routes to Diagnosis for cancer - Determining the patient journey using multiple routine datasets'. Cwt: The National Cancer Waiting Times Monitoring Data Set supports the continued management and monitoring of waiting times. sact: Systemic Anti-Cancer Therapy (chemotherapy detail) data for cancer participants from NHSE covering regimens between 04/2012 and 08/2022. One row per chemotherapy cycle, per tumour (SACT-specific anontumourid), per participant. rtds: The Radiotherapy Data Set (RTDS) standard (SCCI0111) is an existing standard that has required all NHS Acute Trust providers of radiotherapy services in England to collect and submit standardised data monthly against a nationally defined data set since 2009. Data is available from 01/04/2009. The data is linked at a patient level and can be linked to the latest available avpatient table. ncrasdid: The Diagnostic Imaging Dataset (DID) is a central collection of detailed information about diagnostic imaging tests carried out on NHS patients, extracted from local radiology information systems and submitted monthly. The DID captures information about referral source, details of the test (type of test and body site), demographic information such as GP registered practice, patient postcode, ethnicity, gender and date of birth, plus data items about different events (date of imaging request, date of imaging, date of reporting, which allows calculation of time intervals. lucada2013: The National Lung Cancer Audit (LUCADA) looks at the care delivered during referral, diagnosis, treatment and outcomes for people diagnosed with lung cancer and mesothelioma. The data items in the LUCADA dataset are not to be confused with the data items identified as Lung Cancer in the National Cancer dataset. lucada2014: As above. Different schema to lucada2013.

Dataset type

Health and disease

Dataset population size

72874

Keywords

Observations

Observed Node

Disambiguating Description

Measured Value

Measured Property

Observation Date

Persons

Rare Disease Participants

72874

Count

30 Mar 2023

Persons

Cancer Participants

15624

Count

30 Mar 2023

Findings

Cancer Germline - Number of genomes

32753

Count

30 Mar 2023

Findings

Cancer Tumour - Number of genomes

17003

Count

30 Mar 2023

Findings

Rare Disease - Number of genomes

73517

Count

30 Mar 2023

Provenance

Purpose of dataset collection

Disease registry

Source of data extraction

EPR, Electronic survey, Free text NLP, LIMS, Machine generated, Paper-based, Other

Collection source setting

Clinic, Primary care - Clinic, Secondary care - Accident and Emergency, Secondary care - Outpatients, Secondary care - In-patients, Community, Services, Home, Other

Patient pathway description

Secondary care cancer pathways.

Image contrast

Not stated

Biological sample availability

DNA

Structural Metadata

Details

Publishing frequency

Quarterly

Version

19.0.2

Modified

04/02/2026

Distribution release date

30/03/2023

Citation Requirements

Genomics England

Coverage

Start date

01/01/1985

End date

30/12/2022

Time lag

Variable

Geographic coverage

United Kingdom, England

Maximum age range

150

Follow-up

> 10 Years

Accessibility

Language

en

Alignment with standardised data models

NHS DATA DICTIONARY, LOCAL

Controlled vocabulary

OPCS4, READ, SNOMED CT, NHS NATIONAL CODES, ODS, ICD10

Format

Multiple Formats Available

Data Access Request

Dataset pipeline status

Not available

Time to dataset access

1-2 months

Access request cost

Fees will be dependent on the type of access that is necessary. Raw data is not eligible for export. Summary-level data may be exported provided that it is approved through the Genomics England Airlock Process

Access service description

More information about the Genomics England Research Environment can be found here:

https://www.genomicsengland.co.uk/research

Genomics England 100k participants have consented to longitudinal lifetime followup and recontact safely through our clinical network. BRST (Bioinformatics Research Services) are a team of bioinformatics who know the dataset inside out and provide consultancy projects on a case by case basis. Our network of clinical and medical experts can be made available on case by case basis. Researchers have the opportunity to work with our and access the GeCIP network who are a community of world-leading experts in specific cancers and rare diseases.

Data use limitation

General research use

Data use requirements

Ethics approval required,Project-specific restrictions,Publication moratorium

Data Controller

PUBLIC HEALTH ENGLAND

Data Processor

GENOMICS ENGLAND

Dataset Types: Health and disease


Collection Sources: Clinic, Primary care - Clinic, Secondary care - Accident and Emergency, Secondary care - Outpatients, Secondary care - In-patients, Community, Services, Home, Other

Relationships: