Table 1.
Summary of key data items collected by the National Cancer Registration and Analysis
Service (NCRAS), National Institute for Cardiovascular Outcomes Research (NICOR) audits, and electronic health record sources
| Source | Description | Coding | Fields | Years data available |
|---|---|---|---|---|
| National Cancer Registration and Analysis Service (NCRAS) Audits | ||||
| NCRAS Disease Registry: Cancer Registration | National registry: patients diagnosed with cancer (ICD-10 C00-97, D00-48) | Manual extraction from pathology records by trained cancer registration officers |
Patient level (date of birth, sex, ethnicity, postcode at diagnosis, comorbidity score, performance status, deprivation) Tumour level (site of neoplasm, morphology, grade, stage, pathology, site-specific fields) Diagnosis level (date of incidence, basis of diagnosis, route to diagnosis) Treatment level [date of treatment event, type (surgery/radiotherapy/chemotherapy)] Mortality information: date of death, full coded causes of death, location of death (from linked ONS data) Hospital admissions, diagnoses and procedures (from linked HES data) |
1995a–present |
| NCRAS Disease Registry: National Radiotherapy Dataset (RTDS) | Detailed information from all NHS Acute Trust providers of radiotherapy services in England | Radiotherapy providers submit the data and PHE validates and quality assures the data | Decision to treat, radiotherapy priority and intent, treatment start date, radiotherapy prescription, exposures, OPCS primary procedure code | April 2009-present |
| NCRAS Disease Registry: Systemic Anti-Cancer Therapy (SACT) | Detailed information from all organizations providing systemic anti-cancer treatment therapies in, or funded by, the NHS in England | Data are entered during the course of care by clinicians, nurses, pharmacists and other health care providers | Demographic and consultant details, clinical status, programme and regimen, cycle, drug details, outcome | April 2012-present |
| National Institute for Cardiovascular Outcomes Research (NICOR) Audits | ||||
| NICOR Disease Audit: Myocardial Ischaemia National Audit Project (MINAP) | National audit: patients admitted to hospital with acute coronary syndromes | Data abstracted from clinical records are directly submitted via the secure web portal, or by exporting data from hospital clinical information systems, by clinicians or trained clinical audit staff | >120 fields including phenotype (STEMI, NSTEMI, unstable angina), CVD history, ejection fraction, risk factors, cardiac markers, treatment at hospital, prescription of preventive medications on discharge, also includes specific fields for discharge diagnosis of Takotsubo Cardiomyopathy | October 2000-March 2019 |
| NICOR Disease Audit: The National Heart Failure Audit | National audit: patients with an unscheduled admission to hospital who are discharged with a primary diagnosis of heart failure | Data abstracted from clinical records are directly submitted via the secure web portal, or by exporting data from hospital clinical information systems, by clinicians or trained clinical audit staff | >140 fields including CVD medical history, risk factors, cardiac markers, HF diagnosis, medications prior to admission and on discharge | September 2006-March 2019 |
| NICOR Procedure Audit: The National Adult Cardiac Surgery Audit | National audit: collects data on all major heart operations carried out on NHS patients in the UK. Voluntary data also collected from a number of Irish and UK private surgical units | Data abstracted from clinical records are directly submitted via the secure web portal, or by exporting data from hospital clinical information systems, by clinicians or trained clinical audit staff | >190 fields including procedures (aortic surgery, CABG, valve replacement/repair) and devices, CVD history, ejection fraction, risk factors, postoperative and discharge information | December 2002-March 2019 |
| NICOR Procedure Audit: The National Adult Percutaneous Coronary Interventions | National audit: collects data on all PCI (angioplasty) techniques carried out on NHS patients in the UK | Data abstracted from clinical records are directly submitted via the secure web portal, or by exporting data from hospital clinical information systems, by clinicians or trained clinical audit staff | >120 fields including medical history, cardiac anatomy, PCI procedure, cardiac markers, in-hospital outcomes | June 1999-March 2019 |
| NICOR Procedure Audit: The National Congenital Heart Disease Audit | National audit: infants, children, adolescents and adults undergoing interventions for paediatric and congenital heart disease | Data abstracted from clinical records are directly submitted via the secure web portal, or by exporting data from hospital clinical information systems, by clinicians or trained clinical audit staff | >60 fields including procedures (bypass, catheter, diagnostic), antenatal diagnosis, risk factors, in-hospital outcomes (deaths and complications) |
1997–2019 (data due to be included) |
| NICOR Procedure Audit: The National Audit of Cardiac Rhythm Management (CRM) | National audit: implanted cardiac devices and all patients receiving interventional procedures for management of cardiac rhythm disorders | Data abstracted from clinical records are directly submitted via the secure web portal, or by exporting data from hospital clinical information systems, by clinicians or trained clinical audit staff | ECG indications, ejection fraction, procedures (e.g. new pacemaker, generator change), complications, CVD history, ablation procedures, medications, in-hospital and follow-up information, QoL/PROMs indicators | January 2006–March 2019 |
| Electronic Health Record sources | ||||
| Secondary care: Hospital Episode Statistics (HES) | National data warehouse of secondary care admissions, including inpatient, outpatient and accident and emergency admissions | Trained non-clinical coders record data based on the discharge summary, weeks after discharge | Up to 20 ICD-10 diagnosis codes, and all procedures and interventions recorded through OPCS-4, geographical information | 2000–present |
| Mortality data: Office for National Statistics (ONS) | National census of all deaths and causes of death taken from the death certificate | Doctor completes death certificate with cause of death; trained non-clinical coders add ICD codes | Date of death, primary underlying cause of death and up to 14 secondary causes, recorded using ICD-10, place of death | 1990–present |
Historical cancer registrations before 1995 are available but data completeness and case ascertainment is less reliable.
CABG, coronary artery bypass graft; CVD, cardiovascular disease; HF, heart failure; NCRAS, National Cancer Registration and Analysis Service; NICOR, National Institute for Cardiovascular Outcomes Research; NSTEMI, non-ST-elevation myocardial infarction; PCI, percutaneous coronary intervention; PHE, Public Health England; PROMs, patient reported outcome measures; STEMI, ST-elevation myocardial infarction; TC, Takotsubo cardiomyopathy; QoL, quality of life; ICD, International Classification of Diseases; ONS, Office for National Statistics; HES, Hospital Episode Statistics; OPCS, Office of Population Censuses and Surveys; NHS, National Health Service.