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Australian researchers’ perceptions and experiences with stem cell registration

dc.contributor.authorHu, Mengqien
dc.contributor.authorSantos, Danen
dc.contributor.authorLopes, Edileneen
dc.contributor.authorNicol, Dianneen
dc.contributor.authorKurtz, Andreasen
dc.contributor.authorMah, Nancyen
dc.contributor.authorMuller, Sabineen
dc.contributor.authorAnkeny, Rachel A.en
dc.contributor.authorWells, Christine A.en
dc.date.accessioned2025-05-30T19:30:47Z
dc.date.available2025-05-30T19:30:47Z
dc.date.issued2024en
dc.description.abstractThe recently issued ISSCR standards in stem cell research recommend registration of human pluripotent stem cell lines (hPSCs). Registration is critical to establishing stem cell provenance and connecting cell lines to data derived on those lines. In this study, we sought to understand common barriers to registration by conducting interviews with forty-eight Australian stem cell stakeholders, including researchers, clinicians, and industry professionals. Australian stem cell researchers do not routinely register their lines, and only a third of those Australian lines captured by an international registry have fully completed the registration process. Most registered Australian cell lines lack complete information about their ethical provenance or key pluripotency characteristics. Incomplete registration is poorly aligned with the goals of open science on which registries are founded. Users also expressed concerns about the quality of the incomplete information provided to the resource. Registration was considered negatively, for instance as a hurdle or barrier to publication, which impacted on user perceptions of usefulness of registration and lowered the likelihood that they would engage with registries to find resources. Broader adoption of registration by journals, and continued advocacy by stem cell societies, will be important levers for awareness and engagement with registration. Although the Australian community represents a small fraction of potential registry users, the results of this study suggest ways for journals, registries, funders, and the international stem cell community to improve registration compliance.en
dc.description.sponsorshipWe employed multiple methods to identify potential interviewees. This involved reviewing contacts listed for registered Australian lines in hPSCreg (https://hpscreg.eu/) and Stemcell Knowledge & Information Protal (SKIP, https://saiseiiryo.jp/skip_archive/) registry, collaborating with hPSCreg team to identify potential participants from Australian institutions who had previously registered their lines in hPSCreg, and seeking referrals from existing participants. To identified research labs, we reviewed public funding documents at the Australian Research Council (ARC), National Health and Medical Research Council (NHMRC) and Medical Research Future Fund (MRFF) Stem Cell Therapies mission. We also leveraged previously funded national programs such as the Stem Cells Australia initiative, and networks such as the Australasian Society for Stem Cell Research (ASSCR) to identify the members in the Australian stem cell community. Participation in the project was promoted at the ASSCR Conference 2022 and Lorne Genome 2023. Additionally, some early interviewees suggested new participants through their networks. In total, 61 potential interviewees were contacted via email, with 56 responding, resulting in a 92\u202F% response rate. Among these people who responded, eight individuals did not proceed with an interview for various reasons: four stopped responding after an initial expression of interest, two relocated, two directed us to other people. In total, 48 participants were recruited. Recruitment to the study was halted once new themes stopped emerging from the interviews.en
dc.description.statusPeer-revieweden
dc.format.extent6en
dc.identifier.issn1873-5061en
dc.identifier.otherWOS:001264891300001en
dc.identifier.otherORCID:/0000-0002-6413-4150/work/170441437en
dc.identifier.scopus85197287568en
dc.identifier.urihttp://www.scopus.com/inward/record.url?scp=85197287568&partnerID=8YFLogxKen
dc.identifier.urihttps://hdl.handle.net/1885/733755349
dc.language.isoenen
dc.rightsPublisher Copyright: © 2024en
dc.sourceStem Cell Researchen
dc.subjectOpen scienceen
dc.subjectPluripotent stem cell registrationen
dc.subjectResearcher expectationsen
dc.subjectStem cell governanceen
dc.titleAustralian researchers’ perceptions and experiences with stem cell registrationen
dc.typeJournal articleen
dspace.entity.typePublicationen
local.contributor.affiliationHu, Mengqi; University of Melbourneen
local.contributor.affiliationSantos, Dan; Australian National Centre for the Public Awareness of Science, ANU College of Systems and Society, The Australian National Universityen
local.contributor.affiliationLopes, Edilene; University of Adelaideen
local.contributor.affiliationNicol, Dianne; Centre for Law and Geneticsen
local.contributor.affiliationKurtz, Andreas; Fraunhofer Institute for Biomedical Engineeringen
local.contributor.affiliationMah, Nancy; Fraunhofer Institute for Biomedical Engineeringen
local.contributor.affiliationMuller, Sabine; Fraunhofer Institute for Biomedical Engineeringen
local.contributor.affiliationAnkeny, Rachel A.; University of Adelaideen
local.contributor.affiliationWells, Christine A.; University of Melbourneen
local.identifier.citationvolume79en
local.identifier.doi10.1016/j.scr.2024.103482en
local.identifier.purec8c9b801-6704-43b5-a458-b40b439d4849en
local.identifier.urlhttps://www.scopus.com/pages/publications/85197287568en
local.type.statusPublisheden

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