This HDR-UK affiliated project is the basis of the collaboration between the RECORDER team led by Dr Fiona Pearce at the University of Nottingham and the Rare Disease Team at the National Disease Registration Service. This project is using national electronic health records to register and improve the health and care of people with rare diseases.
This project is part of the Registration of Complex Rare Diseases Exemplars in Rheumatology (RECORDER) collaboration between the University of Nottingham, Nottingham University Hospitals NHS Trust and the National Disease Registration Service (NDRS)
Background
Rare autoimmune rheumatic diseases are rare, non-genetic diseases that usually start in adulthood and can be difficult to diagnose. But the data on patients with these sorts of rare disease is patchy and disjointed – for some, we don’t even know basic information like how many people have it, how they’re being treated and where. And because we lack this fundamental patient data, it’s hard to plan and target healthcare services and to run clinical trials to find new and effective treatments.
Aims
This project aims to join-up existing clinical and administrative data to develop and validate methods to identify people with rare diseases and answer questions including:
1) How many people in England are affected by Kawasaki disease, Takayasu arteritis, ANCA-associated vasculitis and Idiopathic inflammatory myositis – see individual projects
2) Steroid burden and the association with toxicity and outcomes among people with rare autoimmune rheumatic diseases
Start date: February 2021