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COVID-19 Infection, Admission and Death Amongst People with Rare Autoimmune Rheumatic Disease in England. Results from the RECORDER 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 Public Health England (PHE). They have access to linked national datasets of electronic health records at patient-identifiable level for the whole population of England. This access is enabled by NCARDRS’ legal permissions to access patient-identifiable data without consent (Section 251 approval, Reference CAG 10-02(d)/2015). For some of RECORDER and NCARDRS COVID-19 response work, the work extends beyond Section 251 approval. In these instances it has been approved under Regulation 3(4) of the Health Service Control of Patient Information Regulations 2002 (COPI), allowing the processing of confidential patient information for the purposes of protecting public health and managing the COVID-19 outbreak. 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. https://www.gov.uk/guidance/the-national-congenital-anomaly-and-rare-disease-registration-service-ncardrs https://www.ndrs.nhs.uk/
- COVID-19 (Disease)
- Autoimmune diseases
- Rheumatic Diseases
- Autoimmune Diseases
- Collagen Diseases
- Epidemiology, rare autoimmune rheumatic disease, COVID-19
- Subjects Allied to Medicine::Anatomy, physiology & pathology::Pathology
- R Medicine::RA Public aspects of medicine
- University of Nottingham, UK Campus::Faculty of Medicine and Health Sciences::School of Medicine
- Public Health England
Data typeTypes of data: The 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 Service data, COVID-19 PCR results stored in the Second Generation Surveillance System (SGSS)). The data will be accessed via the Public Health England (PHE) datalake. PHE datalake Patient-level identifiable data for England including HES, ONS mortality records, and NHS Prescription service data are available in the Public Health England datalake. Format and scale of the data: All the data sources for this project contain millions of records and are supplied in suitable formats by NHS Digital to Public Health England. They are then accessed as comma separated values (CSV) or excel files.
- Rutter, Megan
- Lanyon, Peter
- Hubbard, Richard
- Grainge, Matthew
- Vasculitis UK, British Society of Rheumatology
- CV01, N/A
Data collection methodSecure access through PHE datalake or secure data transfer, where data exist outside the datalake
Legal and ethical issuesDetails of the legal basis to access these data are found in the description section