Ipsos research explores the experiences and challenges faced by individuals living with Rare Autoimmune Rheumatic Diseases (RAIRDs) in the UK

Ipsos conducted an online survey of individuals aged 16+ living with RAIRDs from April 22nd to May 31st, 2024, on behalf of the Rare Autoimmune Rheumatic Disease Alliance (RAIRDA).

RAIRDs are chronic, incurable conditions affecting over 160,000 people in the UK.  Patients were eligible to take part in the survey if they had a diagnosis of any of the following conditions: Lupus, Sjögren’s Disease, Systemic Vasculitis, Systemic Sclerosis (Scleroderma), Myositis, Antiphospholipid syndrome (APS), Raynaud’s disease, and Undifferentiated or Overlap Connective Tissue Disease (UCTD).

At the time of conducting the survey, there were no (known) centralised NHS lists of RAIRD patients that could be used to invite patients to take part in the survey. Therefore, RAIRDA distributed the online survey via an open link through their existing patient networks. The survey was also promoted at the British Society for Rheumatology conference and on social media.

A total of 1,352 questionnaires were completed. Information about the research findings can be found in the data tables.

Please note, due to the lack of a pre-existing profile of patients with RAIRDs to use as a comparison, the data was not weighted. Findings are not intended to be representative of the RAIRD population and present a snapshot of the people who completed this survey.

Author: Laura Dale, Public Affairs