JOURNEY Study Version 1
Research type
Research Study
Full title
Juvenile onset rheumatic diseases: education, vocational readiness, & employment
IRAS ID
334035
Contact name
Suzan Verstappen
Contact email
Sponsor organisation
Umiversity of Manchester
Clinicaltrials.gov Identifier
OBF/23825, Oliver Bird Foundation
Duration of Study in the UK
2 years, 5 months, 31 days
Research summary
The overall aim of the JOURNEY study is to estimate the impact of Juvenile onset rheumatic and musculoskeletal diseases (jRMDs) in adolescents and young adults (AYA) on education, vocation, and employment, as well as the impact on their parents/carers. The study comprises of three work packages and will adopt a mixed methods approach. The first work package (WP1) is a quantitative study to evaluate the educational and socio-economic impact of jRMD on AYA aged 12- 30 years (WP1a) and to evaluate the socio-economic impact on parents/carers of AYA with jRMD (WP1b). WP2 is a qualitative study to examine trajectories of vocational development from the perspective of AYA with jRMDs and their parents/carers. The final work package (WP3) will be a face-2-face workshop to develop resources for relevant stakeholders. We now seek approval to conduct WP1 of the JOURNEY study. This work will then feed into further development of WP2 and finally WP3.
REC name
East Midlands - Derby Research Ethics Committee
REC reference
24/EM/0094
Date of REC Opinion
13 May 2024
REC opinion
Further Information Favourable Opinion