Version: 0.0.6 | Published: 26 Jul 2023 | Updated: 666 days ago
Documentation
Associated Media:
Description:
Data Resource Profile: National Cancer Registration Dataset: https://academic.oup.com/ije/article/49/1/16/5476570 Data Resource Profile: The Systemic Anti-Cancer Therapy (SACT) dataset: https://academic.oup.com/ije/article/49/1/15/5538002
Is Part Of:
NOT APPLICABLE
Coverage
Spatial:
England
Typical Age Range:
0-150
Follow Up:
> 10 YEARS
Physical Sample Availability:
NOT AVAILABLE
Pathway:
Integrated care record covering the whole cancer patient pathway.
Provenance
Origin
Purposes:
DISEASE REGISTRY
Sources:
- EPR
- ELECTRONIC SURVEY
- LIMS
- PAPER BASED
- FREETEXT NLP
- MACHINE GENERATED
- OTHER
Collection Situations:
- CLINIC
- PRIMARY CARE
- OUTPATIENTS
- IN-PATIENTS
- SERVICES
- COMMUNITY
- HOME
- OTHER
Temporal
Accrual Periodicity:
IRREGULAR
Start Date:
01 January 1985
Time Lag:
VARIABLE
Accessibility
Access
Access Rights:
The Office for Data Release (ODR) is responsible for providing a common governance framework for responding to requests to access cancer registration data. Requests are reviewed in line with the confidentiality and data protection provisions in: the common law duty of confidentiality, data protection legislation (including the General Data Protection Regulation), 7 Caldicott principles, the Information Commissioner’s statutory data sharing code of practice, the national data opt-out programme. https://www.gov.uk/government/publications/accessing-public-health-england-data
Access Request Cost:
PHE applies charges on a full economic cost recovery basis for any work to
prepare and release data through the ODR. All requests are charged on a project
by project basis to reflect that the amount of work required to facilitate
access to the data will differ. For the 2020/21 financial year, the unit cost
per hour for ODR services is set at £415.80 (excluding VAT). Please note that
unless a valid exemption applies, VAT will be charged at the prevailing rate at
time of invoicing. Service charges are either ‘variable’ or ‘fixed’ as detailed:
Service Costs: ODR review, contract execution and ongoing administration =
£831.60 (fixed). Amendments to existing extant contracts (inclusive of ODR
review and management of contract variations) = £415.80 (fixed). Data
preparation, extraction and quality assurance of the data (applicable to new
applications and amendments) or bespoke data linkage = charges will be quoted
based on the complexity of the request and the frequency at which the data will
be disseminated and/or bespoke linkage will be applied (variable).
Delivery Lead Time:
VARIABLE
Jurisdictions:
GB-EAW
Data Controller:
Public Health England
Data Processor:
Not Applicable
Usage
Data Use Limitations:
RESEARCH SPECIFIC RESTRICTIONS
Resource Creators:
- This work uses data that has been provided by patients and collected by the NHS as part of their care and support. The data are collated
- maintained and quality assured by the National Cancer Registration and Analysis Service
- which is part of Public Health England (PHE). Access to the data was facilitated by the PHE Office for Data Release.
Is Referenced By:
- Data Resource Profile: National Cancer Registration Dataset: https://academic.oup.com/ije/article/49/1/16/5476570
- Data Resource Profile: The Systemic Anti-Cancer Therapy (SACT) dataset: https://academic.oup.com/ije/article/49/1/15/5538002
Format and Standards
Vocabulary Encoding Schemes:
- LOCAL
- OPCS4
- READ
- SNOMED CT
- SNOMED RT
- DM+D
- NHS NATIONAL CODES
- ODS
- ICD10
- ICD9
- ICDO3
Languages:
en
Formats:
- csv
- dta
Enrichment and Linkage
Qualified Relations:
- NCRAS has been linked to a number of other collections and datasets including: CPRD (GOLD & ARUM)
- NHS Business Services Authority Prescribing Data
- HES
- ONS Civil Registration
- Molecular Data
- MINAP
- NICOR
- as well as a number of standing cohorts including UK Biobank.
Derivations:
- There are approximately 200 derived fields across the NCRAS data tables that support privacy conserving methods to be implemented (e.g. age at diagnosis in 5 year age bands
- or full dates truncated to month and year
- or year alone). In addition
- fields such as STAGE_BEST
- ROUTE_CODE
- FINAL_ROUTE and Charlson Scores are derived based on published methodologies.
Observations
Statistical Population
Population Description
Population Size
Measured Property
Observation Date
Persons
300,000 patients per year
Count
01 January 2020
Origin
Name:
SDE Home