University of Nottingham

Academic Institute

Fiona PearceMegan RutterMary Bythellhttps://web.www.healthdatagateway.org/project/5015685150491451

British Society for Rheumatology

760692000000000

The aim of the RECORDER project is to use a health data science approach to develop methods to achieve complete national registration of people with rare non-genetic rare diseases with the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) at Public Health England, and use registration to improve healthcare delivery and outcomes, and support development of better treatments. The new National Congenital Anomaly and rare Disease Registration Service (NCARDRS) at Public Health England gives us an opportunity to create major improvements for people living with a rare disease. Information on rare diseases has been scarce and scattered across different sources. NCARDRS are creating a national register (list) of people with a rare disease. This will improve the quantity, quality and availability of rare disease data, leading to better research and targeted healthcare service provision. This project aims to discover the best methods to find and register people with non-inherited rare diseases, of which the rare autoimmune rheumatic diseases are good examples. NCARDRS are already able to register people with rare diseases that are apparent at birth, start in early childhood, or have genetic causes, because they have existing methods to find them. This research is needed so that children and adults with later-onset, non- inherited diseases are not left behind. This project will show the benefits of registration, through research addressing important issues for people with these diseases. Objectives: 1. Build the national register: using multiple sources of existing information and develop methods for on-going automated registration. 2. Improve healthcare delivery: find information needed to plan health services, discover outcomes, and assess whether current services are fair. 3. Support development of better treatments: provide information necessary to plan clinical trials, and to approve new treatments in the NHS.

This project aims to discover the best methods to find and register people with non-inherited rare diseases, of which the rare autoimmune rheumatic diseases are good examples. NCARDRS are already able to register people with rare diseases that are apparent at birth, start in early childhood, or have genetic causes, because they have existing methods to find them. This research is needed so that children and adults with later-onset, non- inherited diseases are not left behind. This project will show the benefits of registration, through research addressing important issues for people with these diseases.

18/01/2022

Release