The RECORDER (Registration of Complex Rare Diseases – Exemplars in Rheumatology) 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 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