P090 Understanding opinions on consenting to research studies, particularly using long-term health outcome data into adulthood: a survey of 61 adults with juvenile idiopathic arthritis

Background/Aims Many childhood-onset chronicconditions, such as juvenile idiopathic arthritis (JIA), can continue into adulthood. During childhood, parents/guardians consent children into cohort studies. However, continuingresearch into adulthood is essential to understand long-term clinical, physical, social, and psychological outcomes over the life course. In addition, research datasets can be linked with NHS national datasets to supplementpatient information. These could offer a unique opportunity to capture outcomesinto adulthood, which can be challenging once a young person leaves paediatriccare. Under current UK ethics, linkage of data must stop at the age of 16 yearsold, unless the person re-consents themselves. This presents challenges, asmany 16 to 18 years old may have moved, been discharged, or moved to anotherhospital outside of the research study. Methods A survey was developed on Qualtrics alongside patient partners and distributed January-2025 on social media, through patient partners, and via national arthritis charities. Ethical approval was granted by the University of Manchester Research Ethics Committee (2024-21972-38819). Results 61 adults with childhood-onset arthritis completed the survey; 92% female, 93% White ethnicity, 56% aged ≥45 years, 46% diagnosed age <5 years, with 44% having previously participated in a research study. Overall, 88% reported they would have joined an arthritis research study as a child (with parent/guardian consent). Of those, 86% would have consented (alongside their parent/guardian) for researchers to link study data with their NHS records. Most (95%) participants reported they would join a research study as an adult. Of those, 53% were happy for the research team to continue to access NHS records after the age of 16 years without explicit re-consent (relying solely on original parental/guardian consent) and/or assumed it was already happening. Participants highlighted they should “already be aware of their participation in the study and [would be] happy for it to continue into adulthood”, with some suggesting participants should not be contacted for re-consent at age 16 years, but rather with “an option to withdraw”. One participant commented “I would have thought [that] research only up to 16 would limit things for those with long term conditions”. Conclusion These findings suggest that current consent processes for long-term studies are inadequate. Many people with childhood-onset arthritis assume research continues beyond age 16 without re-consent and seemed concerned at this research gap. This highlights the need to re-evaluate consent procedures for long-term research studies 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. Disclosure L. Kearsley-Fleet: None. J. Leslie: None. N. Shaw: None. M. Johnson: None. L.R. Wedderburn: None. K.L. Hyrich: None. J.H. Humphreys: None.