{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,31]],"date-time":"2026-08-31T13:57:53Z","timestamp":1788184673376,"version":"build-2803163510"},"reference-count":0,"publisher":"Swansea University","issue":"1","license":[{"start":{"date-parts":[[2024,9,19]],"date-time":"2024-09-19T00:00:00Z","timestamp":1726704000000},"content-version":"unspecified","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["IJPDS"],"abstract":"<jats:p>IntroductionFetal Alcohol Spectrum Disorder (FASD) is one of the leading non-genetic causes of developmental disability worldwide and is thought to be particularly common in the UK. Despite this, there is a lack of data on FASD in the UK.\nObjectiveTo conduct public and professional involvement work to establish stakeholder views on the feasibility, acceptability, key purposes, and design of a national linked longitudinal research database for FASD in the UK.\nMethodsWe consulted with stakeholders using online workshops (one for adults with FASD [and their supporters] N\\,$=$\\,5; one for caregivers of people with FASD (N=7), 1:1\/small-team video calls\/email communication with clinicians, policymakers, data-governance experts, third-sector representatives, and researchers [N=35]), and one hybrid clinical workshop (N\\,$=$\\,17). Discussions covered data availability, benefits, challenges, and design preferences for a national pseudonymised linked database for FASD. We derived key themes from the notes and recordings collected across all involvement activities.\nResultsOur tailored, multi-method approach generated high levels of stakeholder engagement. Stakeholders expressed support for a pseudonymised national linked database for FASD. Key anticipated benefits were the potential for: increased awareness and understanding of FASD leading to better support; new insights into clinical profiles leading to greater diagnostic efficiency; facilitating international collaboration; and increased knowledge of the long-term impacts of FASD on health, social care, education, economic and criminal justice outcomes. Given the rich data infrastructure established in the UK, stakeholders expressed that a national linked FASD database could be world-leading. Common stakeholder concerns were around privacy and data-sharing and the importance of retaining space for clinical judgement alongside insights gained from quantitative analyses.\nConclusionsMulti-method and multidisciplinary public and professional involvement activities demonstrated support for a national linked database for FASD in the UK. Flexible, diverse, embedded stakeholder collaboration will be essential as we establish this database.<\/jats:p>","DOI":"10.23889\/ijpds.v9i1.2381","type":"journal-article","created":{"date-parts":[[2024,9,19]],"date-time":"2024-09-19T08:54:55Z","timestamp":1726736095000},"source":"Crossref","is-referenced-by-count":3,"title":["Establishing a national linked database for Fetal Alcohol Spectrum Disorder (FASD) in the UK: multi-method public and professional involvement to determine acceptability and feasibility"],"prefix":"10.23889","volume":"9","author":[{"given":"Sarah","family":"Harding","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8883-7512","authenticated-orcid":false,"given":"Beverley","family":"Samways","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Amy","family":"Dillon","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0000-3119-7086","authenticated-orcid":false,"given":"Sandra","family":"Butcher","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Andy","family":"Boyd","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2171-928X","authenticated-orcid":false,"given":"Raja","family":"Mukherjee","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Penny","family":"Cook","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cheryl","family":"McQuire","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"9980","published-online":{"date-parts":[[2024,9,19]]},"container-title":["International Journal of Population Data Science"],"original-title":[],"link":[{"URL":"https:\/\/ijpds.org\/article\/download\/2381\/6064","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/ijpds.org\/article\/download\/2381\/6065","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/ijpds.org\/article\/download\/2381\/6066","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/ijpds.org\/article\/download\/2381\/6064","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,9,19]],"date-time":"2024-09-19T08:54:56Z","timestamp":1726736096000},"score":1,"resource":{"primary":{"URL":"https:\/\/ijpds.org\/article\/view\/2381"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,9,19]]},"references-count":0,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2024,1,9]]}},"URL":"https:\/\/doi.org\/10.23889\/ijpds.v9i1.2381","relation":{"has-preprint":[{"id-type":"doi","id":"10.1101\/2024.03.26.24304887","asserted-by":"object"}]},"ISSN":["2399-4908"],"issn-type":[{"value":"2399-4908","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,9,19]]}}}