University of Nottingham

Academic Institute

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

British Society for Rheumatology

5015690000000000

This research is part of the Registration of Complex Rare Diseases - Exemplars in Rheumatology (RECORDER) project and is collaborative work with the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) at Public Health England. RECORDER's research has shown that people with rare autoimmune rheumatic diseases were at increased risk of death during the first two months of the COVID-19 pandemic. Research in to why they were at increased risk is of vital importance and this work forms the basis of my PhD. I will also look at potentially modifiable risk factors such as medications, and at the effectiveness of the COVID-19 vaccination in this group. Purpose: To quantify rates and patterns of COVID-19 infection in people with rare autoimmune rheumatic diseases compared to the general population in England. To study the association between hospital admission and mortality with demographics (age, sex, ethnicity, socioeconomic status), treatment (steroids and immunosuppression) and shielding status, and the effectiveness of vaccination in preventing infections in this group. Objectives: 1) Calculate the rates of laboratory confirmed COVID-19 infection, hospitalisation and death among people with RAIRD in England during the second wave of the COVID-19 pandemic, and compare these rates to those in the general population. Quantify the effect of age, sex, ethnicity, socioeconomic status and co-morbidities on outcomes. 2) Quantify the effect of corticosteroid treatment and immunosuppression, and the relationship with shielding status, on COVID-19 infection, hospitalisation and death using data from the whole COVID-19 pandemic to date. 3) Quantify the effectiveness of vaccination in preventing COVID-19 infection, hospitalisation and death among people with RAIRD compared to the general population.

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.

1. Deliver national registration: I am assembling existing sources of information including research studies and electronic health records and linking them together to find everyone in England with rare autoimmune rheumatic diseases. I will use computer analysis of this data combined with a detailed understanding of healthcare (health data science) to develop and test methods to automatically add people to the national register (list) – unless they choose to opt out. This will also add value to existing research studies, by linking them to national datasets. 2. Discover information for healthcare planners : I will use the complete national register to discover how many people in England have rare autoimmune rheumatic diseases, describe health outcomes for these diseases using linked electronic health records, and assess if people with rare autoimmune rheumatic diseases currently have equal access to high-cost treatments regardless of who they are and where they live. Healthcare planners can use this information to plan better services. 3. Support innovation: I will describe steroid use in rare autoimmune rheumatic diseases, and test if there is a relationship between total (cumulative) steroid dose and complications such as broken bones, infections, diabetes, heart disease and dying sooner. I will provide evidence of current treatment pathways and outcomes for rare autoimmune rheumatic diseases which have new treatments in development. This information is needed for decision making when approving new treatments in the NHS.

18/01/2022

Release