Rheumatoid Arthritis Risk Survey v1
Research type
Research Study
Full title
Perceptions of risk, predictive testing, and risk communication amongst people with rheumatoid arthritis and their first degree relatives: A cross-sectional survey
IRAS ID
203683
Contact name
Marie Falahee
Contact email
Clinicaltrials.gov Identifier
ERN_16-0575, ERN
Duration of Study in the UK
2 years, 6 months, 14 days
Research summary
Rheumatoid arthritis (RA) is a common chronic condition that can cause significant pain and disability. Early treatment of RA is associated with improved clinical outcomes. There is therefore considerable research interest in the identification of individuals at risk of developing RA in the future, in order to facilitate early treatment and the development of preventive interventions.
First degree relatives of people with RA are at an increased risk of developing RA and are therefore likely candidates for predictive / preventive approaches. It is therefore important to understand how this group perceives their susceptibility to develop RA and their views on predictive testing.
Access to first degree relatives is usually dependent on the willingness of existing patients with a diagnosis of RA to pass on information to their relatives. It is therefore also important to understand patients’ perceptions of RA risk, and their willingness to communicate with relatives about their relatives’ risk of developing RA and predictive testing.
Qualitative investigations have been undertaken by this research team to explore these issues, but large scale quantitative approaches are now needed to develop a robust and representative understanding, and to identify cognitive and demographic predictors of perceptual variations. The present study addresses this research need using two surveys, one for patients with a diagnosis of rheumatoid arthritis, and one for their first degree relatives. The findings of these surveys will inform the development of effective methods of risk communication and positive interventions to reduce RA risk.
REC name
South Central - Berkshire B Research Ethics Committee
REC reference
16/SC/0369
Date of REC Opinion
4 Jul 2016
REC opinion
Favourable Opinion