The RECORDER team are proud to be part of the UKRI rare disease node: Histionode; led by Prof Matthew Collin at Newcastle University. This study investigates mortality from haemophagocytic lymphohistiocytosis (HLH) across 29 European countries over a 10-year period using anonymised data from national death certificates collated by Eurostat.

This project explored contemporary indications, patterns of use, and volume of prescriptions for high dose and/or long-term oral glucocorticoids

This project reviewed the literature on how commonly people develop adrenal insufficiency after stopping taking glucocorticoids

The idiopathic inflammatory myopathies (IIM) describe a broad spectrum of conditions that are commonly referred to as ‘myositis’. IIMs are rare rheumatological autoimmune conditions which can lead to inflammation in various parts of the body, but mainly the skeletal muscles, skin, lungs and heart

Takayasu arteritis is a rare type of vasculitis that affects the aorta and its branches, as well as the pulmonary arteries. It is associated with significant morbidity, both from the disease and its treatment. This project aims to describe the prevalence and incidence of Takayasu arteritis in England, to help with the planning of specialist care and treatment for this condition.

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.

Sjogren’s, Scleroderma and Systemic Lupus Erythematosus (SLE) are conditions that occur when the immune system gets confused and targets healthy tissues such as connective tissues leading to inflammation and damage. Raynaud’s can be associated with these conditions as it may co-exist with them.

MELODY has recruited more than 35,000 immunocompromised people, including over 6,000 people with a rare rheumatic disease, to determine their immune response to the Covid-19 vaccination and assess future risk of infection, hospitalisation and survival

This project explores whether guided imagery techniques can help people cope with and manage illnesses such as vasculitis

This project describes the national incidence of Kawasaki disease in England

This project evolved throughout the COVID-19 pandemic to address clinically important questions regarding outcomes of COVID-19 infection, such as hospitalisation and COVID-19-related death, it has been supported by multiple funders

This Vasculitis UK project assessed strength of response to Covid-19 vaccination among people with vasculitis and rare autoimmune diseases in Nottingham

ANCA-associated vasculitis (AAV) is a group of autoimmune disorders that involve inflammation of the blood vessels. It is characterized by the presence of antibodies called antineutrophil cytoplasmic antibodies (ANCA). AAV can affect small, medium, and large blood vessels throughout the body, and it can cause a range of symptoms depending on which organs are affected.

This project explored patient perspectives on the impacts of appearance and weight changes due to long-term steroid use