{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,10]],"date-time":"2026-04-10T17:24:38Z","timestamp":1775841878804,"version":"3.50.1"},"reference-count":18,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2025,8,22]],"date-time":"2025-08-22T00:00:00Z","timestamp":1755820800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2025,8,22]],"date-time":"2025-08-22T00:00:00Z","timestamp":1755820800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/501100000272","name":"National Institute for Health and Care Research","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100000272","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Res Involv Engagem"],"abstract":"<jats:title>Abstract<\/jats:title>\n          <jats:p>Children and young people continue to face many barriers to actively participating in clinical research, despite the same research questions being just as applicable to them as their adult counterparts. Exclusion of paediatric populations from drug trials can result in a lack of timely, equitable access to disease modifying medications. In other circumstances, there is the risk of extrapolating evidence from adult populations that may not meet the needs of a young population. In this brief report, we highlight the importance of directly involving children and young people when evaluating inclusion in research studies. This is illustrated by our service evaluation investigating current paediatric haemodialysis practices and opinions, and how these relate to a UK based clinical trial called the \u2018NightLife study\u2019 that is being conducted in adult haemodialysis centres. We discuss how age-inclusive approaches are aiming to change the paediatric clinical research landscape going forward, using research initiatives built on the principles of equity and inclusivity.<\/jats:p>","DOI":"10.1186\/s40900-025-00780-6","type":"journal-article","created":{"date-parts":[[2025,8,22]],"date-time":"2025-08-22T12:19:18Z","timestamp":1755865158000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["The importance of patient engagement when promoting age-inclusive research"],"prefix":"10.1186","volume":"11","author":[{"given":"Lydia E.","family":"Roberts","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"James O.","family":"Burton","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Manish D.","family":"Sinha","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jonathan","family":"Barratt","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Louise","family":"Oni","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"297","published-online":{"date-parts":[[2025,8,22]]},"reference":[{"key":"780_CR1","doi-asserted-by":"publisher","unstructured":"Hoon D, Taylor MT, Kapadia P, Gerhard T, Strom BL, Horton DB. Trends in off-label drug use in ambulatory settings: 2006\u20132015. Pediatrics. 2019;144(4). https:\/\/doi.org\/10.1542\/peds.2019-0896","DOI":"10.1542\/peds.2019-0896"},{"key":"780_CR2","doi-asserted-by":"publisher","unstructured":"Petkova V, Georgieva D, Dimitrov M, Nikolova I. Off-label prescribing in pediatric population-literature review for 2012\u20132022. Pharmaceutics. 2023;15(12). https:\/\/doi.org\/10.3390\/pharmaceutics15122652","DOI":"10.3390\/pharmaceutics15122652"},{"issue":"10","key":"780_CR3","doi-asserted-by":"publisher","first-page":"e674","DOI":"10.1016\/S2666-7568(22)00186-6","volume":"3","author":"YY Tan","year":"2022","unstructured":"Tan YY, Papez V, Chang WH, Mueller SH, Denaxas S, Lai AG. Comparing clinical trial population representativeness to real-world populations: an external validity analysis encompassing 43\u2008895 trials and 5\u2008685\u2008738 individuals across 989 unique drugs and 286 conditions in England. Lancet Healthy Longev. 2022;3(10):e674\u201389. https:\/\/doi.org\/10.1016\/S2666-7568(22)00186-6","journal-title":"Lancet Healthy Longev"},{"key":"780_CR4","doi-asserted-by":"publisher","first-page":"12","DOI":"10.1186\/1824-7288-37-12","volume":"37","author":"AL Knellwolf","year":"2011","unstructured":"Knellwolf AL, Bauzon S, Alberighi OD, Lutsar I, B\u00e1csy E, Alfarez D, et al. Framework conditions facilitating paediatric clinical research. Ital J Pediatr. 2011;37:12. https:\/\/doi.org\/10.1186\/1824-7288-37-12","journal-title":"Ital J Pediatr"},{"issue":"2","key":"780_CR5","doi-asserted-by":"publisher","first-page":"169","DOI":"10.1089\/1044546041649057","volume":"14","author":"AT Derivan","year":"2004","unstructured":"Derivan AT, Leventhal BL, March J, Wolraich M, Zito JM. The ethical use of placebo in clinical trials involving children. J Child Adolesc Psychopharmacol. 2004;14(2):169\u201374. https:\/\/doi.org\/10.1089\/1044546041649057","journal-title":"J Child Adolesc Psychopharmacol"},{"issue":"2","key":"780_CR6","doi-asserted-by":"publisher","first-page":"117","DOI":"10.1056\/NEJMoa2204233","volume":"388","author":"WG Herrington","year":"2023","unstructured":"Herrington WG, Staplin N, Wanner C, Green JB, Hauske SJ, Emberson JR, et al. Empagliflozin in patients with chronic kidney disease. N Engl J Med. 2023;388(2):117\u201327. https:\/\/doi.org\/10.1056\/NEJMoa2204233","journal-title":"N Engl J Med"},{"issue":"15","key":"780_CR7","doi-asserted-by":"publisher","first-page":"1436","DOI":"10.1056\/NEJMoa2024816","volume":"383","author":"HJL Heerspink","year":"2020","unstructured":"Heerspink HJL, Stef\u00e1nsson BV, Correa-Rotter R, Chertow GM, Greene T, Hou FF, et al. Dapagliflozin in patients with chronic kidney disease. N Engl J Med. 2020;383(15):1436\u201346. https:\/\/doi.org\/10.1056\/NEJMoa2024816","journal-title":"N Engl J Med"},{"key":"780_CR8","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMoa2409183","author":"WG Herrington","year":"2024","unstructured":"Herrington WG, Staplin N, Agrawal N, Wanner C, Green JB, Hauske SJ, et al. Long-term effects of empagliflozin in patients with chronic kidney disease. N Engl J Med. 2024. https:\/\/doi.org\/10.1056\/NEJMoa2409183","journal-title":"N Engl J Med"},{"issue":"6","key":"780_CR9","doi-asserted-by":"publisher","first-page":"907","DOI":"10.1093\/ndt\/gfae029","volume":"39","author":"O Gross","year":"2024","unstructured":"Gross O, Haffner D, Schaefer F, Weber LT. SGLT2 inhibitors: approved for adults and cats but not for children with CKD. Nephrol Dialysis Transplantation. 2024;39(6):907\u20139. https:\/\/doi.org\/10.1093\/ndt\/gfae029","journal-title":"Nephrol Dialysis Transplantation"},{"issue":"5","key":"780_CR10","doi-asserted-by":"publisher","first-page":"395","DOI":"10.1136\/archdischild-2011-300639","volume":"97","author":"L Tjaden","year":"2012","unstructured":"Tjaden L, Tong A, Henning P, Groothoff J, Craig JC. Children\u2019s experiences of dialysis: a systematic review of qualitative studies. Arch Dis Child. 2012;97(5):395\u2013402. https:\/\/doi.org\/10.1136\/archdischild-2011-300639","journal-title":"Arch Dis Child"},{"issue":"5","key":"780_CR11","doi-asserted-by":"publisher","first-page":"554","DOI":"10.1067\/mpd.2003.192","volume":"142","author":"PH Caldwell","year":"2003","unstructured":"Caldwell PH, Butow PN, Craig JC. Parents\u2019 attitudes to children\u2019s participation in randomized controlled trials. J Pediatr. 2003;142(5):554\u20139. https:\/\/doi.org\/10.1067\/mpd.2003.192","journal-title":"J Pediatr"},{"issue":"1","key":"780_CR12","doi-asserted-by":"publisher","first-page":"522","DOI":"10.1186\/s13063-023-07565-w","volume":"24","author":"KL Hull","year":"2023","unstructured":"Hull KL, Bramham K, Brookes CL, Cluley V, Conefrey C, Cooper NJ, et al. The nightlife study - the clinical and cost-effectiveness of thrice-weekly, extended, in-centre nocturnal haemodialysis versus daytime haemodialysis using a mixed methods approach: study protocol for a randomised controlled trial. Trials. 2023;24(1):522. https:\/\/doi.org\/10.1186\/s13063-023-07565-w","journal-title":"Trials"},{"issue":"5","key":"780_CR13","doi-asserted-by":"publisher","first-page":"241","DOI":"10.1136\/bmjqs-2022-015578","volume":"32","author":"P Griffiths","year":"2023","unstructured":"Griffiths P, Dall\u2019Ora C. Nurse staffing and patient safety in acute hospitals: Cassandra calls again? 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Int J Nurs Stud. 2022;134:104311. https:\/\/doi.org\/10.1016\/j.ijnurstu.2022.104311","journal-title":"Int J Nurs Stud"},{"issue":"3","key":"780_CR16","doi-asserted-by":"publisher","first-page":"125","DOI":"10.3345\/cep.2022.01431","volume":"66","author":"YH Ahn","year":"2023","unstructured":"Ahn YH. Optimal hemodialysis treatment for pediatric kidney failure patients. Clin Exp Pediatr. 2023;66(3):125\u20136. https:\/\/doi.org\/10.3345\/cep.2022.01431","journal-title":"Clin Exp Pediatr"},{"issue":"5","key":"780_CR17","doi-asserted-by":"publisher","first-page":"925","DOI":"10.1007\/s00467-018-4190-1","volume":"34","author":"R Raina","year":"2019","unstructured":"Raina R, Lam S, Raheja H, Krishnappa V, Hothi D, Davenport A, et al. Pediatric intradialytic hypotension: recommendations from the pediatric continuous renal replacement therapy (PCRRT) workgroup. 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Accessed 18\/10\/2024."}],"container-title":["Research Involvement and Engagement"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s40900-025-00780-6.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1186\/s40900-025-00780-6\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s40900-025-00780-6.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,8,22]],"date-time":"2025-08-22T12:19:22Z","timestamp":1755865162000},"score":1,"resource":{"primary":{"URL":"https:\/\/researchinvolvement.biomedcentral.com\/articles\/10.1186\/s40900-025-00780-6"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,8,22]]},"references-count":18,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2025,12]]}},"alternative-id":["780"],"URL":"https:\/\/doi.org\/10.1186\/s40900-025-00780-6","relation":{},"ISSN":["2056-7529"],"issn-type":[{"value":"2056-7529","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,8,22]]},"assertion":[{"value":"10 July 2025","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"18 August 2025","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"22 August 2025","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"This project was a service evaluation and patient involvement project. According to National Health Service guidance formally ethical approval was not required however the questionnaire was registered with the Alder Hey Governance & Quality Assurance Department (audit number 7148).All questionnaire respondents agreed for their anonymised answers to be used in any subsequent analysis or publication of the questionnaire.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"All questionnaire respondents agreed for their anonymised answers to be used in any subsequent analysis or publication of the questionnaire.The manuscript does not contain any personally identifiable data from any individual person.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"The authors declare no competing interests.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}},{"value":"Not applicable.","order":5,"name":"Ethics","group":{"name":"EthicsHeading","label":"Clinical trial number"}}],"article-number":"102"}}