Opinions on contributing data to research studies: survey results from adults living with juvenile idiopathic arthritis (JIA)

OBJECTIVES: Many childhood-onset chronic conditions continue into adulthood. Life-course research is essential to understand long-term outcomes in these individuals. Parents/guardians consent children into cohort studies and data-linkage with medical records. However, under UK ethics, linkage must stop at age 16 without specific re-consent. This presents challenges, as many young adults have moved, been discharged, or changed hospitals. This research aims to understand opinions on contributing data to research studies, particularly continuing to use long-term health outcome data into adulthood. METHODS: A Qualtrics survey was developed alongside patient partners; distributed January-2025 via social media, patient partners, and national arthritis charities. Ethical approval granted by the University of Manchester Research Ethics Committee (2024-21972-38819). RESULTS: 57 adults with childhood-onset arthritis completed the survey; 93% female, 93% White, 56% aged ≥45 years, 46% diagnosed between 11-16 years, 49% previously participated in a research study. Overall, 88% reported they would have joined an arthritis research study in childhood, and 79% would consent for study data to link with medical records. Most (95%) participants would join a research study as an adult, and 50% were happy for continued access to medical records after age 16 without explicit re-consent, and/or assumed it was already happening. CONCLUSION: These findings suggest that current consent processes for studies spanning from childhood into adulthood are inadequate. There is a need to re-evaluate consent procedures for life-course research to ensure that paediatric and young people's research remains a priority, and that young adults with childhood-onset conditions are not unnecessarily excluded from research.