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Children and young people with rare genetic conditions caused by micro-deletions or -duplications (Copy Number Variants or CNVs) have increased risk of disrupted sleep and poorer neurodevelopmental (ND) outcomes. The \u2018Sleep Detectives\u2019 study aims to investigate this by tracking behavioural and neurophysiological signatures of sleep health in young people with ND risk or ND-CNVs. To optimally achieve this, we worked with families with ND-CNVs and charity partners to co-design our tools, methods, study protocol, and materials.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Method<\/jats:title>\n                    <jats:p>We established a Lived Experience Advisory Group (LEAP): nine parents, 13 children and young people with ND-CNVs, and representatives of UK charities Max Appeal and Unique. Together, the research team and LEAP co-designed two in-person family workshops to collect feedback on acceptability of sleep monitoring devices, the design of bespoke cognitive tasks, and overall study protocol. Informal interviews and surveys enabled LEAP members and researchers to reflect and learn from their Patient\/Public Involvement (PPI) experiences.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Key outputs included pre-workshop information materials, and multiple insights and recommendations, all of which were incorporated iteratively in refining 16 different aspects of the main study design. These included more flexibility in data collection, selection of sleep devices, customisation of cognitive tasks, and improved document language. In a survey, 100% of workshop respondents (15\/15) were positive or very positive about the overall study. The PPI process was highly valued by LEAP members, workshop attendees, and the research team. One investigator described it as \u201creinvigorating my love of research by helping me focus on science that matters\u201d. Participating families also established peer support networks.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Involving families affected by ND-CNVs in study co-design maximised opportunities for acceptability, accessibility and scalability. The researchers gained inspiration and deeper understanding of the impact of ND-CNVs on families. Families gained awareness about research, established connections with each other and peer support, and were enthusiastic about future research involvement. This experience empowered families to engage more deeply with the research process and made the PPI work more impactful and inclusive.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1186\/s40900-026-00935-z","type":"journal-article","created":{"date-parts":[[2026,7,13]],"date-time":"2026-07-13T08:08:32Z","timestamp":1783930112000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Public involvement and co-design of longitudinal studies of sleep health alongside young people with rare genetic conditions"],"prefix":"10.1186","volume":"12","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-2808-3552","authenticated-orcid":false,"given":"Julie P.","family":"Clayton","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Josephine E.","family":"Haddon","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jessica","family":"Hall","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Meg","family":"Attwood","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christopher","family":"Jarrold","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lioba C. 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Res Involv Engagem. 2025;11:90. https:\/\/doi.org\/10.1186\/s40900-025-00747-7.","journal-title":"Res Involv Engagem"}],"container-title":["Research Involvement and Engagement"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s40900-026-00935-z.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1186\/s40900-026-00935-z","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s40900-026-00935-z.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,7,13]],"date-time":"2026-07-13T21:02:19Z","timestamp":1783976539000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1186\/s40900-026-00935-z"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,7,13]]},"references-count":37,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2026,12]]}},"alternative-id":["935"],"URL":"https:\/\/doi.org\/10.1186\/s40900-026-00935-z","relation":{},"ISSN":["2056-7529"],"issn-type":[{"value":"2056-7529","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,7,13]]},"assertion":[{"value":"20 March 2026","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"25 June 2026","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"13 July 2026","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"Ethics approval is not applicable for the PPI advisory-only activities described in this report, in accordance with best practice standards of the UK National Institute for Health and Care Research (NIHR)\n                      \n                      .","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"All authors contributed to the study and approved the final version for publication. The parents and children involved in the Lived Experience Advisory Panel and PPI workshops provided consent for the inclusion of their testimonials and images in this manuscript.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"We wish to thank public members of the Lived Experience Advisory Panel for collaboration and support on the project: Lisa Cundall, Anita Czekus, Kathy Goodwin, Alexander Huxford, Keith Huxford, Laura Lavery, Gemma Mackew, Samantha Rogers, Mark Tripp (MaxAppeal), Julie Wootton (MaxAppeal), Sarah Wynn (Unique)).","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Collaboration"}},{"value":"Further information about the Sleep Detectives study, including videos created to explain about the study for children and young people, can be found at the following URL\n                      \n                      [last accessed 4 February 2026]. Further information on our charity partners can be found on their respective websites: Max Appeal\n                      \n                      and Unique\n                      \n                      .","order":5,"name":"Ethics","group":{"name":"EthicsHeading","label":"Note"}},{"value":"The authors declare no competing interests.","order":6,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"113"}}