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 st...
| Publicado en: | Rheumatology Vol. 65; no. 7; pp. 1 - 8 |
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| Autores principales: | , , , , , , |
| Formato: | research tables/charts Journal Article |
| Publicado: |
Oxford University Press / USA
Jul2026
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=195931807&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 195931807 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 14620324 DN9 jtl: Rheumatology issn: 14620324 maglogo: N pubinfo: dt: Jul2026 vid: 65 iid: 7 pid: 622 pub: Oxford University Press / USA artinfo: ui: 195931807 195931807 195931807 10.1093/rheumatology/keag331 195931807 ppf: 1 ppct: 7 formats: tig: atl: Opinions on contributing data to research studies: survey results from adults living with juvenile idiopathic arthritis (JIA). aug: au: Kearsley-Fleet, Lianne Leslie, Jasmine Shaw, Natasha Johnson, Michelle Wedderburn, Lucy R Hyrich, Kimme L Humphreys, Jenny H affil: Centre for Epidemiology Versus Arthritis, Centre for Musculoskeletal Research, Division of Musculoskeletal and Dermatological Sciences, The University of Manchester, Manchester Academic Health Sciences Centre, Manchester, UK sug: subj: Arthritis, Juvenile Rheumatoid Diagnosis Research, Medical Consent Evaluation Medical Record Linkage Health Information Outcomes (Health Care) Electronic Health Records Research Subject Retention Public Opinion Human Survey Research Surveys Male Female Middle Age Research Subjects Access to Information Life Course Perspective Middle Aged: 45-64 years Male Female ab: 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 and distributed January 2025 via social media, patient partners and national arthritis charities. Ethical approval was granted by the University of Manchester Research Ethics Committee (2024–21972-38819). Results Fifty-seven adults with childhood-onset arthritis completed the survey; 93% were female, 93% were White, 56% were aged ≥45 years, 46% were diagnosed between 11 and 16 years, and 49% had 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. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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