COVID-19 Infection, Admission and Death Amongst People with Rare Autoimmune Rheumatic Disease in England. Results from the RECORDER Project.

Abstract

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/