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To date, the research agenda has been largely determined by researchers, funders and policy makers, with limited involvement of parents, who are key stakeholders. Researchers at UCL Great Ormond Street Institute of Child Health in partnership with community\u2010based organisation 4M Network of Mentor Mothers conducted two workshops with parents in March 2022 to establish research priorities for children born HIV\u2010free, and key considerations for methodological approaches both to research and engagement with the affected communities.<\/jats:p><\/jats:sec><jats:sec><jats:title>Discussion<\/jats:title><jats:p>When exploring research on children born HIV\u2010free, we consider the following: what aspects of current research are aligned with women and parents\u2019 priorities, what is missing and what approaches would be preferred. A holistic approach to research on children born HIV\u2010free should be prioritised, focussing on a breadth of outcomes and how they intersect. Secondary use of existing data sources should be maximised to facilitate this, with a view of monitoring the long\u2010term effects of fetal antiretroviral drug exposure alongside other key health and developmental outcomes. Involving and engaging with parents, and children where possible, must be at the heart of research design to maximise relevance and impact of findings for the affected communities. Potential barriers to engaging with individuals who were children born HIV\u2010free include parental disclosure and individuals not identifying as a child born HIV\u2010free to a mother living with HIV. Stigma\u2010free language must be incorporated into the vocabulary of researchers and other stakeholders, avoiding reference to exposure; we propose the term \u201cchildren born HIV\u2010free.\u201d<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>Mothers and parents living with HIV should be involved in research about their children born HIV\u2010free and are key in identifying research priorities so that findings may translate into an impact on their children's health and wellbeing. Meaningful involvement of women living with HIV through trusted community partners is an effective mechanism by which to elicit views on research about their children.<\/jats:p><\/jats:sec>","DOI":"10.1002\/jia2.26150","type":"journal-article","created":{"date-parts":[[2023,11,1]],"date-time":"2023-11-01T08:46:45Z","timestamp":1698828405000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":4,"title":["Setting the research agenda: involving parents in research on children who are HIV\u2010free"],"prefix":"10.1002","volume":"26","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-5775-1495","authenticated-orcid":false,"given":"Laurette L.","family":"Bukasa","sequence":"first","affiliation":[{"name":"UCL Great Ormond Institute of Child Health  London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Angelina","family":"Namiba","sequence":"additional","affiliation":[{"name":"4M Network of Mentor Mothers  London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Matilda","family":"Brown","sequence":"additional","affiliation":[{"name":"4M Network of Mentor Mothers  London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Estelle","family":"Ndu'ngu","sequence":"additional","affiliation":[{"name":"4M Network of Mentor Mothers  London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Mercy","family":"Nangwale","sequence":"additional","affiliation":[{"name":"4M Network of Mentor Mothers  London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Gillian","family":"Letting","sequence":"additional","affiliation":[{"name":"4M Network of Mentor Mothers  London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Patricia","family":"Chirwa","sequence":"additional","affiliation":[{"name":"4M Network of Mentor Mothers  London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Claire","family":"Thorne","sequence":"additional","affiliation":[{"name":"UCL Great Ormond Institute of Child Health  London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Shema","family":"Tariq","sequence":"additional","affiliation":[{"name":"UCL Institute for Global Health  London UK"},{"name":"Mortimer Market Centre, Central and North West London NHS Foundation Trust  London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2023,11]]},"reference":[{"key":"e_1_2_8_2_1","doi-asserted-by":"publisher","DOI":"10.9745\/GHSP-D-17-00097"},{"key":"e_1_2_8_3_1","doi-asserted-by":"publisher","DOI":"10.1016\/S2214-109X(19)30448-6"},{"key":"e_1_2_8_4_1","unstructured":"PetersHF BukasaL SconzaR SmeatonL WebbS ThorneC.Preventing vertical HIV transmission in the UK: successes and emerging challenges. 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