The RECORDER (Registration of Complex Rare Diseases – Exemplars in Rheumatology) project
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The RECORDER (Registration of Complex Rare Diseases – Exemplars in Rheumatology) project, in collaboration with the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS), has established the methodologies for identification and registration of people with rare autoimmune diseases within Hospital Episodes Statistics (HES) data. NCARDRS is part of the National Rare Disease Registration Service (NDRS) at NHS Digital (NHSD). They have access to linked national datasets of electronic health records at patient-identifiable level for the whole population of England. The legal basis to access this data is covered by NCARDRS’ Section 254 approval (sections 254(1) and 254(6) of the 2012 Health and Social Care Act). This contains specific legal instruction to collect patient data without informed consent. Due to legal and ethical considerations, supporting data from RECORDER publications cannot be made openly available. However, NCARDRS data are available to all who have a legal basis to access them. Further details about the data and conditions for access are available by application to the National Disease Registration Service. NDRS website: https://digital.nhs.uk/ndrs How NDRS collects and records data: https://digital.nhs.uk/ndrs/data/collecting-and-keeping-patient-data-safe Accessing NDRS data: https://digital.nhs.uk/ndrs/data/access-to-data
Related publication DOI
- Autoimmune disease, Epidemiology, COVID-19
- Autoimmune Diseases/physiopathology, Epidemiology
- Rare autoimmune rheumatic disease, epidemiology, incidence, prevalence, mortality, COVID-19, lupus, sle, vasculitis, scleroderma, systemic sclerosis, myositis, idiopathic inflammatory myopathies, juvenile inflammatory arthritis, behcet's disease, giant cell arteritis, temporal arteritis, takayasu arteritis, anca-associated vasculitis
- R Medicine::RA Public aspects of medicine
- University of Nottingham, UK Campus::Faculty of Medicine and Health Sciences
- NHS Digital
Data typeThe types of data to be managed are quantitative data generated from electronic health records, and other administrative records in England (e.g. Hospital Episode Statistics (HES), Office for National Statistics (ONS) mortality records, NHS Prescription service data, National Immunisation Management Service data, COVID-19 PCR results stored in the Second Generation Surveillance System (SGSS), Blueteq data). The data will be accessed via the NHSD datalake and the secure NCARDRS folder.
- Lanyon, Peter
- Grainge, Matthew
- Hubbard, Richard
- National Institute for Health Research
- Versus Arthritis, Vasculitis UK, Lupus UK, Scleroderma and Raynaud's UK, British Society for Rheumatology
- MR is funded by a Versus Arthritis Clinical Research Fellowship (award reference 22727). FP is funded by an NIHR Advanced Fellowship (NIHR300863).
- 1998 to present day
Data collection methodAll the data sources for this project contain millions of records and are supplied in suitable formats by NHSD. They are then accessed as comma separated values (CSV) or excel files.
Legal and ethical issuesDetails of the legal basis to access these data are found in the description section