Biopreservation and Biobanking最新文献

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Implementing Sweden's Biobank Act (2023:38): Insights and Lessons for International Collaboration in Health Research. 实施瑞典生物银行法案(2013:38):卫生研究国际合作的见解和教训。
IF 1.4 4区 生物学
Biopreservation and Biobanking Pub Date : 2026-05-01 DOI: 10.1177/19475535261432944
Jennifer Viberg Johansson, Mio Fredriksson
{"title":"Implementing Sweden's Biobank Act (2023:38): Insights and Lessons for International Collaboration in Health Research.","authors":"Jennifer Viberg Johansson, Mio Fredriksson","doi":"10.1177/19475535261432944","DOIUrl":"https://doi.org/10.1177/19475535261432944","url":null,"abstract":"<p><p>Sweden's new Biobank Act (2023:38) introduces a more coordinated and robust legal framework for research using biosamples. This article presents the major changes introduced by the Act, as well as insights from regional biobank coordinators who ensure coordination, compliance, and access to biosamples for research and key stakeholders in the research infrastructure. The article highlights both the law's potential and the practical challenges of its rollout in a decentralized health care system, particularly regarding information technology systems, patient information and consent, and procedural harmonization. We discuss how diverging legal frameworks across European Union (EU) member states and internationally can both enable and hinder collaboration, particularly in the context of biobank responsibility and consent structures. The experiences from implementing the new Biobank Act in Sweden underscore the need for timely planning and coordination among stakeholders to enable research on biosamples, improve digital tools, and achieve legal clarity-elements that are equally relevant across the EU and beyond. Ultimately, enabling seamless collaboration requires a shared commitment to harmonization, not only in policy but also in practice.</p>","PeriodicalId":55358,"journal":{"name":"Biopreservation and Biobanking","volume":" ","pages":"19475535261432944"},"PeriodicalIF":1.4,"publicationDate":"2026-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147823473","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"生物学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Abstract Author Index. 摘要作者索引。
IF 1.4 4区 生物学
Biopreservation and Biobanking Pub Date : 2026-05-01 DOI: 10.1177/19475535261443861
{"title":"Abstract Author Index.","authors":"","doi":"10.1177/19475535261443861","DOIUrl":"https://doi.org/10.1177/19475535261443861","url":null,"abstract":"","PeriodicalId":55358,"journal":{"name":"Biopreservation and Biobanking","volume":" ","pages":"19475535261443861"},"PeriodicalIF":1.4,"publicationDate":"2026-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147823468","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"生物学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Governance and Prioritization of Human Spinal Cord Tissue Procurement for Research in an Organ Donation Setting. 在器官捐赠环境下,人类脊髓组织采购的管理和优先顺序。
IF 1.4 4区 生物学
Biopreservation and Biobanking Pub Date : 2026-04-21 DOI: 10.1177/19475535261443118
Sasi Kumar Jagadeesan, Ryan Vimukthie Sandarage, Eve C Tsai
{"title":"Governance and Prioritization of Human Spinal Cord Tissue Procurement for Research in an Organ Donation Setting.","authors":"Sasi Kumar Jagadeesan, Ryan Vimukthie Sandarage, Eve C Tsai","doi":"10.1177/19475535261443118","DOIUrl":"https://doi.org/10.1177/19475535261443118","url":null,"abstract":"<p><strong>Introduction: </strong>Procurement of human spinal cord tissue for research is rare and typically occurs through deceased organ donation pathways. Existing tissue banking guidance, largely derived from surgical pathology practice, does not adequately address the ethical, anatomical, and operational constraints unique to donation-integrated spinal cord procurement.</p><p><strong>Objectives: </strong>The objective of this article is to describe institutionally implemented governance and prioritization practices for donation-integrated procurement and research banking of human spinal cord tissue within a tertiary academic hospital setting.</p><p><strong>Methods: </strong>This review summarizes practice-based governance guidelines developed and applied within an established organ donation program. The approach emphasizes conservative prioritization, strict separation of clinical and research roles, a tiered informed consent structure, explicit stopping rules, and defined governance structures for procurement decision making. The spinal cord is treated as the ethically defining and rate-limiting tissue, with biologically associated tissues considered only under conditional circumstances.</p><p><strong>Results: </strong>The governance practices delineate clear operative boundaries for when spinal cord procurement may proceed, establish decision hierarchies for inclusion of associated tissues, and define conditions under which procurement must be deferred. Operational experience from the institutional donation-integrated procurement program included 96 authorized research donors, of whom 92 were enrolled under the research protocol and 88 proceeded to successful spinal cord procurement and accessioning into the institutional biobank. Central principles guiding procurement include preservation of donor dignity, noninterference with organ donation workflows, maintenance of anatomical integrity, and irreversible transition of tissue from the clinical to the research domain under institutional custodianship.</p><p><strong>Conclusions: </strong>Governance-centered, practice-based approaches are essential for ethically grounded procurement of rare human spinal cord tissue in organ donation settings. Emphasis on upstream decision making, explicit scope limits, and conservative default thresholds supports translational research while preserving clinical primacy and ethical clarity. These principles may assist other centers seeking to integrate spinal cord research within established organ donation programs.</p>","PeriodicalId":55358,"journal":{"name":"Biopreservation and Biobanking","volume":" ","pages":"19475535261443118"},"PeriodicalIF":1.4,"publicationDate":"2026-04-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147730775","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"生物学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Toward Sustainable Biobanking: Identifying Key Performance Indicators Through Stakeholder Engagement in Slovakia. 迈向可持续生物银行:通过斯洛伐克利益相关者参与确定关键绩效指标。
IF 1.4 4区 生物学
Biopreservation and Biobanking Pub Date : 2026-04-18 DOI: 10.1177/19475535261432905
Ľubica Kotorová Slušná
{"title":"Toward Sustainable Biobanking: Identifying Key Performance Indicators Through Stakeholder Engagement in Slovakia.","authors":"Ľubica Kotorová Slušná","doi":"10.1177/19475535261432905","DOIUrl":"https://doi.org/10.1177/19475535261432905","url":null,"abstract":"<p><strong>Background: </strong>The strategic development and sustainability of biobanks depend on systematic monitoring and evaluation of their performance. Defining appropriate key performance indicators (KPIs) remains challenging, as biobanks must balance the diverse needs of stakeholders with operational quality and alignment with international standards. In Slovakia, where the biobank network is still emerging, no systematic, stakeholder-driven effort to define context-specific KPIs has yet been undertaken.</p><p><strong>Methods: </strong>Building on a systematic literature review, we conducted a stakeholder survey to prioritize performance indicators for Slovak biobanks. A questionnaire with 54 indicators was distributed to over 150 representatives from research, health care, patient organizations, government, industry, and ethics committees. Respondents (<i>n</i> = 23) rated indicators on a 0-5 scale and selected their top 5 key and important indicators. Indicators were classified into four categories based on mean rating (>4), consensus (standard deviation <1), and frequency of selection.</p><p><strong>Results: </strong>Twelve indicators were identified as key, 10 as very important, 27 as moderately important, and 5 as less important. Research outputs-such as the number of clinical studies involving the biobank and the number of research projects supported-were most frequently prioritized. Operational indicators, including stored sample quantity, quality control policies, comprehensiveness of clinical data, and adherence to standard operating procedures, were also highly valued. Despite the modest sample size, findings showed broad consensus across stakeholder groups. Continuous monitoring was rated extremely important (mean = 4.63, SD = 0.58), with qualitative feedback emphasizing sustainability, quality assurance, feedback, performance, and strategic development.</p><p><strong>Conclusions: </strong>This study provides the first stakeholder-driven prioritization of KPIs for Slovak biobanks. Results highlight a consensus on indicators reflecting scientific impact, operational reliability, and quality assurance, while financial and governance metrics were deprioritized. Establishing a context-specific monitoring framework can strengthen transparency, support strategic decision-making, and align Slovak biobanks with European initiatives and national priorities.</p>","PeriodicalId":55358,"journal":{"name":"Biopreservation and Biobanking","volume":" ","pages":"19475535261432905"},"PeriodicalIF":1.4,"publicationDate":"2026-04-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147719021","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"生物学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
A Case Study: Testing of an Artificial Intelligence Chatbot Designed for Guiding and Assisting Participants at a Biobank Research Site. 案例研究:为指导和协助生物库研究现场参与者而设计的人工智能聊天机器人的测试。
IF 1.4 4区 生物学
Biopreservation and Biobanking Pub Date : 2026-04-06 DOI: 10.1177/19475535261433440
Fennie van der Graaf, Alexandra Matei, Giuseppe Marinelli
{"title":"A Case Study: Testing of an Artificial Intelligence Chatbot Designed for Guiding and Assisting Participants at a Biobank Research Site.","authors":"Fennie van der Graaf, Alexandra Matei, Giuseppe Marinelli","doi":"10.1177/19475535261433440","DOIUrl":"https://doi.org/10.1177/19475535261433440","url":null,"abstract":"<p><p>This study investigated if improving a chatbot using user test feedback can enhance the perceived value of a chatbot for a specific biobanking use case. The chatbot was designed to guide participants in a research study around a biobank site to facilitate their data collection experience by conversing with them about what to do and where to go and answering any questions about the measurements, the research, or the biobank. A total of 32 test participants tested the chatbot and provided feedback about their experience, and the answers were analyzed to evaluate perceived value. The first group of users tested the initial version of the chatbot, and the second group tested the improved version of the chatbot. The results demonstrated that by including user feedback to design the chatbot, the perceived value in the second testing increased. Following these early-stage study results, it was determined that the chatbot was ready for deployment in the biobank.</p>","PeriodicalId":55358,"journal":{"name":"Biopreservation and Biobanking","volume":" ","pages":"19475535261433440"},"PeriodicalIF":1.4,"publicationDate":"2026-04-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147624651","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"生物学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Freeze-Dried-Conserved Bacteria Can Be Identified by Matrix-Assisted Laser Desorption/Ionization Time-of-Flight Mass Spectrometry Without the Need of Prior Culturing. 冷冻干燥保存的细菌可以用基质辅助激光解吸/电离飞行时间质谱法进行鉴定,而无需事先培养。
IF 1.4 4区 生物学
Biopreservation and Biobanking Pub Date : 2026-04-06 DOI: 10.1177/19475535261420921
Mennat El Ghalid, Gérald Touak, Dorian Garnier, Fay Betsou, Dominique Clermont
{"title":"Freeze-Dried-Conserved Bacteria Can Be Identified by Matrix-Assisted Laser Desorption/Ionization Time-of-Flight Mass Spectrometry Without the Need of Prior Culturing.","authors":"Mennat El Ghalid, Gérald Touak, Dorian Garnier, Fay Betsou, Dominique Clermont","doi":"10.1177/19475535261420921","DOIUrl":"https://doi.org/10.1177/19475535261420921","url":null,"abstract":"<p><strong>Introduction: </strong>Biobanking practices are continuously evolving to improve and accelerate sample preparation and analysis.</p><p><strong>Objectives: </strong>At the Biological Resource Center of the Institut Pasteur, our goal is to develop new and optimized methods for sample processing. In this study, we aimed to establish a culture-independent approach for identifying bacteria directly from their freeze-dried state.</p><p><strong>Methods: </strong>Freeze-dried bacteria from 25 species were reconstituted in saline solution, mechanically lysed, and their proteins extracted with acetonitrile and formic acid, followed by matrix-assisted laser desorption/ionization time-of-flight mass spectrometry analysis.</p><p><strong>Results: </strong>The method enabled the reliable identification of diverse bacterial species. Spectrophotometric measurements led to the definition of a reproducible O.D.<sub>600</sub> threshold, above which all strains were consistently and accurately identified.</p><p><strong>Conclusion: </strong>This approach provides a fast and robust alternative for the characterization of bacterial samples across diverse taxonomic groups.</p>","PeriodicalId":55358,"journal":{"name":"Biopreservation and Biobanking","volume":" ","pages":"19475535261420921"},"PeriodicalIF":1.4,"publicationDate":"2026-04-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147624578","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"生物学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Strategic Planning as a Community Effort: Surveying the Perspectives of Members of the German Biobank Alliance. 作为社区努力的战略规划:调查德国生物银行联盟成员的观点。
IF 1.4 4区 生物学
Biopreservation and Biobanking Pub Date : 2026-04-01 Epub Date: 2025-09-03 DOI: 10.1177/19475535251366754
Corinna Klingler, Johanna Schiller, Verena Huth, Ronny Baber, Romy Kirsten, Cornelia Specht
{"title":"Strategic Planning as a Community Effort: Surveying the Perspectives of Members of the German Biobank Alliance.","authors":"Corinna Klingler, Johanna Schiller, Verena Huth, Ronny Baber, Romy Kirsten, Cornelia Specht","doi":"10.1177/19475535251366754","DOIUrl":"10.1177/19475535251366754","url":null,"abstract":"<p><strong>Background: </strong>The German Biobank Node (GBN) coordinates the national network of academic biobanks in Germany; the German Biobank Alliance (GBA). At the beginning of 2025, the GBA consisted of 42 biobanks. With an upcoming strategic reorientation, the GBN/GBA was interested in understanding the perspectives of their community to ensure that strategic decisions were aligned with their needs and interests.</p><p><strong>Materials and methods: </strong>An online survey with a cross-sectional design was conducted with the GBA community, targeting mostly first-line management of GBA biobanks. The invitation to the survey was sent via an internal GBA mailing list. It addressed primarily satisfaction with GBN/GBA services, organization of and collaboration within GBN/GBA, and expectations/wishes for the future. Responses were analyzed using descriptive statistics and qualitative content analysis.</p><p><strong>Results: </strong>Participants generally considered being part of GBA to be important to very important. They emphasized the opportunity to network and exchange with colleagues as particularly helpful, but also training opportunities and quality management (QM) tools provided. In terms of organization, they found that the benefits of cooperating within GBA largely outweighed efforts and that opportunities to participate in processes were adequate. However, they also identified areas for improvement, for example, in the provision of information on how to join or establish working groups. In terms of relevant future topics, participants identified lobbying, networking within and outside GBA, training, and QM as particularly important priorities for GBN/GBA, as well as securing funding and strengthening local cooperation for individual biobanks.</p><p><strong>Discussion: </strong>The findings have informed the strategic development of GBN/GBA, with QM, education, and networking being the top future priorities. In terms of networking, the GBN/GBA has emphasized the importance of making the perspective of the community heard in other national networks. How to address sustainable funding remains an open question.</p>","PeriodicalId":55358,"journal":{"name":"Biopreservation and Biobanking","volume":" ","pages":"116-125"},"PeriodicalIF":1.4,"publicationDate":"2026-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144994582","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"生物学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
The College of American Pathologists Biorepository Accreditation Program: Results from the First 10 Years. 美国病理学家学院生物库认证计划:前10年的结果。
IF 1.4 4区 生物学
Biopreservation and Biobanking Pub Date : 2026-04-01 Epub Date: 2025-08-12 DOI: 10.1177/19475535251365758
Nalin Leelatian, Joan H Rose, Sarah Cliff, Richard C Davis, Helena Ellis, Jing Di, Basal Kashlan, Nilsa C Ramirez, Jim Vaught, Erik Zmuda, Shannon J McCall, Rebecca C Obeng
{"title":"The College of American Pathologists Biorepository Accreditation Program: Results from the First 10 Years.","authors":"Nalin Leelatian, Joan H Rose, Sarah Cliff, Richard C Davis, Helena Ellis, Jing Di, Basal Kashlan, Nilsa C Ramirez, Jim Vaught, Erik Zmuda, Shannon J McCall, Rebecca C Obeng","doi":"10.1177/19475535251365758","DOIUrl":"10.1177/19475535251365758","url":null,"abstract":"<p><strong>Introduction: </strong>The College of American Pathologists (CAP) Biorepository Accreditation Program (BAP) was established in 2012 with the goal of providing standardized requirements that ensure high quality for procuring, processing, storing, distributing, and computerizing information of biospecimens for scientific investigations. CAP BAP was the first biorepository accreditation program, and, since the program started in 2012, the world's second biorepository accreditation standard was issued by the International Organization for Standardization (ISO) as ISO 20387 in 2018. CAP BAP serves as an interface between several programs and draws best practices from renowned organizations. This elective program is based on a peer-inspection model to ensure that the inspectors have proper expertise and to promote educational efforts through information sharing. On-site inspections occur every 2 years, like other CAP Accreditation Programs, with an interim self-inspection in the off year. The program compliance is assessed based on CAP Accreditation Checklists, which are regularly revised.</p><p><strong>Objective: </strong>This article reviews the accomplishments of the first 10 years of the CAP Biorepository Accreditation Program.</p><p><strong>Results: </strong>As of December 2024, 104 biorepositories are CAP BAP accredited, which increased from 53 accredited biorepositories in 2018. Accreditation of 10 additional biorepositories is underway. A total of 88 inspections were completed between January 2017 and December 2022; 16 were initial inspections and 72 were reinspections. Deficiencies, defined as insufficient or lack of evidence of compliance with a checklist item, were mainly related to equipment/instrumentation (24%), quality management (15%), safety (14%), information technology (13%), personnel (13%), specimen handling and quality control (9%), facilities (6%), and regulatory (6%) issues. The proportion of deficiencies between categories was like the first 5 years.</p><p><strong>Conclusion: </strong>The increased number of accredited biorepositories, in both academic and commercial settings, highlights the continued success of the program and its applicability to maintaining high standards for biorepositories.</p>","PeriodicalId":55358,"journal":{"name":"Biopreservation and Biobanking","volume":" ","pages":"109-115"},"PeriodicalIF":1.4,"publicationDate":"2026-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144823200","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"生物学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Saliva Biobanking: A Scoping Review of Collection, Processing, and Storage Practices to Enhance Diagnostic Potential. 唾液生物银行:收集,处理和储存实践的范围审查,以提高诊断潜力。
IF 1.4 4区 生物学
Biopreservation and Biobanking Pub Date : 2026-04-01 Epub Date: 2025-06-16 DOI: 10.1089/bio.2025.0043
Manuela da Silva Spinola, Danielle Viana Ribeiro, Giulia Beletato Nery, David D Fischer, Nailê Damé-Teixeira, Débora Heller
{"title":"Saliva Biobanking: A Scoping Review of Collection, Processing, and Storage Practices to Enhance Diagnostic Potential.","authors":"Manuela da Silva Spinola, Danielle Viana Ribeiro, Giulia Beletato Nery, David D Fischer, Nailê Damé-Teixeira, Débora Heller","doi":"10.1089/bio.2025.0043","DOIUrl":"10.1089/bio.2025.0043","url":null,"abstract":"<p><strong>Objectives: </strong>This study aimed to systematically map the literature on saliva collection, processing, and storage methods for biobanking purposes, identifying current practices and gaps in standardization.</p><p><strong>Materials and methods: </strong>A systematic search was conducted in five electronic databases and gray literature. Original research articles reporting cross-sectional and longitudinal studies using saliva for biobanking, as well as reports and protocols for biobank establishment, were included. The review adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews guidelines, with two reviewers independently assessing eligibility and extracting data.</p><p><strong>Results: </strong>A total of 50 articles were included, revealing that most studies were reports on biobank establishment (38%), followed by longitudinal studies (28%), protocols (20%), and cross-sectional studies (14%). Saliva collection methods varied, with commercial kits being the most reported (40%), followed by sterile tubes (22%). While 64% of studies described processing methods and 78% reported storage methods, significant gaps in reporting were noted. Unstimulated saliva was the most commonly collected sample type (38%), and most studies focused on adult participants (46%), often with disease conditions (36%). However, many studies did not provide sufficient details on collection methods, processing techniques, storage conditions, or participant demographics.</p><p><strong>Conclusion: </strong>This review highlights the urgent need for standardized protocols in saliva biobanking to ensure consistency, reliability, and reproducibility in diagnostic research. The lack of uniformity in methodologies across studies limits the potential of saliva biobanks as a resource for identifying biomarkers of systemic and oral diseases. Establishing harmonized guidelines will enhance international collaboration, enable robust analyses, and maximize the utility of saliva in advancing personalized medicine and public health.</p>","PeriodicalId":55358,"journal":{"name":"Biopreservation and Biobanking","volume":" ","pages":"157-165"},"PeriodicalIF":1.4,"publicationDate":"2026-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144303687","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"生物学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Development of a Multimedia Electronic Consent Platform for Biobanking and Research Utilizing Opinions from Children, Teens, and Adults. 利用儿童、青少年和成人的意见开发用于生物银行和研究的多媒体电子同意平台。
IF 1.4 4区 生物学
Biopreservation and Biobanking Pub Date : 2026-04-01 Epub Date: 2025-07-14 DOI: 10.1089/bio.2024.0165
Iryna Kayda, Ashton Ellis, Vi Nguyen, Holly Longstaff, Elodie Portales-Casamar, Julie M Robillard, Alice Virani, Ashley McKerrow, Michelle Dittrick, George Lei, Suzanne Vercauteren
{"title":"Development of a Multimedia Electronic Consent Platform for Biobanking and Research Utilizing Opinions from Children, Teens, and Adults.","authors":"Iryna Kayda, Ashton Ellis, Vi Nguyen, Holly Longstaff, Elodie Portales-Casamar, Julie M Robillard, Alice Virani, Ashley McKerrow, Michelle Dittrick, George Lei, Suzanne Vercauteren","doi":"10.1089/bio.2024.0165","DOIUrl":"10.1089/bio.2024.0165","url":null,"abstract":"<p><strong>Objective: </strong>Ethical research recruitment relies on effective informed consent. We sought feedback and acceptance from users regarding an interactive, multimedia, electronic consent (e-consent) platform for recruitment of research participants to the BC Children's Hospital BioBank (BCCHB). We aimed to enhance user experience when considering research participation and documenting consent decisions through the modality of an e-consent.</p><p><strong>Study design: </strong>A prototype e-consent was developed and end-user opinions regarding content, visuals, user satisfaction, and electronic consent/assent practices were obtained from children, teens, and adults via an online survey and focus groups. A finalized e-consent was submitted for research ethics board (REB) approval.</p><p><strong>Results: </strong>All age groups rated the description of information, images, and formatting in the e-consent as highly favorable. Teens and adults preferred online (38% and 42%) rather than paper-based (17% and 16%) consent, while children expressed no preference. Majority of children (100%), teens (92%), and adults (98%) agreed or strongly agreed that they understood all the information given during the online consent process. No significant differences were found in survey responses between age groups. Adult and teen focus groups suggested improvements in formatting and addition of features to further clarify terms like \"ongoing donation\" and \"privacy measures.\" All ages preferred the ability to complete the e-consent independently, with optional assistance from research staff. The e-consent received REB approval and was implemented for BCCHB recruitment.</p><p><strong>Conclusion: </strong>An e-consent was developed and its modality was successfully accepted by end-users from several age groups, including children and teens, for use in pediatric biobanking. This method may potentially improve the process of completing research consent, particularly with adolescents.</p>","PeriodicalId":55358,"journal":{"name":"Biopreservation and Biobanking","volume":" ","pages":"126-135"},"PeriodicalIF":1.4,"publicationDate":"2026-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144638692","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"生物学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
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