Abstract 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.
Kearsley-Fleet et al. (Wed,) studied this question.