Suppr超能文献

儿科生物库助力儿童临床和转化研究。

Pediatric biobanks to enhance clinical and translational research for children.

机构信息

Clinical and Translational Research Unit, Santobono-Pausilipon Children's Hospital, 80129, Naples, Italy.

Childhood Cancer Registry of Campania, Santobono-Pausilipon Children's Hospital, 80129, Naples, Italy.

出版信息

Eur J Pediatr. 2023 Apr;182(4):1459-1468. doi: 10.1007/s00431-023-04818-3. Epub 2023 Jan 24.

Abstract

Including children in biomedical research is an argument for continual reflection and practice refinement from an ethical and legal standpoint. Indeed, as children reach adulthood, a reconsent method should be used, and data connected with samples should ideally be updated based on the children's growth and long-term results. Furthermore, because most pediatric disorders are uncommon, children's research initiatives should conform to standard operating procedures (SOPs) set by worldwide scientific organizations for successfully sharing data and samples. Here, we examine how pediatric biobanks can help address some challenges to improve biomedical research for children. Indeed, modern biobanks are evolving as complex research platforms with specialized employees, dedicated spaces, information technologies services (ITS), and ethical and legal expertise. In the case of research for children, biobanks can collaborate with scientific networks (i.e., BBMRI-ERIC) and provide the collection, storage, and distribution of biosamples in agreement with international standard procedures (ISO-20387). Close collaboration among biobanks provides shared avenues for maximizing scarce biological samples, which is required to promote the translation of scientific breakthroughs for developing clinical care and health policies tailored to the pediatric population. Moreover, biobanks, through their science communication and dissemination activities (i.e., European Biobank Week), may be helpful for children to understand what it means to be engaged in a research study, allowing them to see it as a pleasant, useful, and empowering experience. Additionally, biobanks can notify each participant about which projects have been accomplished (i.e., through their websites, social media networks, etc.); they can facilitate future reconsent procedures and update sample-associated data based on the children's growth. Finally, because of the increasing interest from public and commercial organizations in research efforts that include the sharing and reuse of health data, pediatric biobanks have a crucial role in this context. Consequently, they could benefit from funding opportunities for sustaining research activities even regarding rare pediatric disorders.  Conclusion: Pediatric biobanks are helpful for providing biological material for research purposes, addressing ethical and legal issues (i.e. data protection, consent, etc.), and providing control samples from healthy children of various ages and from different geographical regions and ethnicities. Therefore, it is vital to encourage and maintain children's engagement in medical research programs and biobanking activities, especially as children become adults, and reconsent procedures must be applied. What is Known: • Biobanks are critical research infrastructures for medical research, especially in the era of "omic" science. However, in light of their fragility and rights children's participation in biobanking and medical research programs is a complex argument of continuous debate in scientific literature. What is New: • We propose a review of the literature on pediatric biobanks with a particular focus on oncological biobanks. The main current limitations and challenges for pediatric biobanks are presented and possible solutions are discussed.

摘要

将儿童纳入生物医学研究从伦理和法律角度来看,是持续反思和实践完善的论据。实际上,随着儿童成年,应采用重新同意的方法,并且理想情况下,应根据儿童的成长和长期结果更新与样本相关的数据。此外,由于大多数儿科疾病较为罕见,儿童研究计划应符合全球科学组织为成功共享数据和样本而制定的标准操作程序(SOP)。在这里,我们研究了儿科生物库如何帮助解决一些挑战,以改善儿童的生物医学研究。实际上,现代生物库正在发展成为具有专业员工,专用空间,信息技术服务(ITS)以及伦理和法律专业知识的复杂研究平台。就儿童研究而言,生物库可以与科学网络(即 BBMRI-ERIC)合作,并根据国际标准程序(ISO-20387)进行生物样本的收集,存储和分发。生物库之间的密切合作提供了共享途径,可以最大程度地利用稀缺的生物样本,这对于促进科学突破转化为制定针对儿科人群的临床护理和健康政策非常重要。此外,生物库可以通过其科学交流和传播活动(例如,欧洲生物库周),帮助儿童了解参与研究的意义,使他们将其视为一种愉快,有用和赋权的体验。此外,生物库可以通知每位参与者哪些项目已经完成(例如,通过其网站,社交媒体网络等);他们可以促进未来的重新同意程序,并根据儿童的成长更新与样本相关的数据。最后,由于公共和商业组织对包括健康数据共享和再利用在内的研究工作的兴趣日益浓厚,儿科生物库在这种情况下起着至关重要的作用。因此,即使是针对罕见的儿科疾病,他们也可以从维持研究活动的资金机会中受益。结论:儿科生物库有助于提供用于研究目的的生物材料,解决伦理和法律问题(例如数据保护,同意等),并提供来自不同年龄,不同地理位置和不同种族的健康儿童的对照样本。因此,鼓励和维持儿童参与医学研究计划和生物库活动至关重要,特别是当儿童成年后,必须适用重新同意程序。已知内容:生物库是医学研究的关键研究基础设施,尤其是在“组学”科学时代。但是,鉴于其脆弱性以及儿童参与生物库和医学研究计划的权利,这是科学界持续辩论的复杂论点。新内容:我们提出了对儿科生物库文献的综述,特别关注肿瘤学生物库。提出了儿科生物库的主要当前限制和挑战,并讨论了可能的解决方案。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/fe68/9871420/665217ec432d/431_2023_4818_Fig1_HTML.jpg

文献AI研究员

20分钟写一篇综述,助力文献阅读效率提升50倍。

立即体验

用中文搜PubMed

大模型驱动的PubMed中文搜索引擎

马上搜索

文档翻译

学术文献翻译模型,支持多种主流文档格式。

立即体验