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An International Survey of Brain Banking Operation and Characterization Practices

机译:脑库操作和表征实践的国际调查

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Brain banks continue to make a major contribution to the study of neurological and psychiatric disorders. The current complexity and scope of research heighten the need for well-characterized cases and the demand for larger cohorts and necessitate strategies, such as the establishment of bank networks based in regional areas. While individual brain banks have developed protocols that meet researchers' needs within the confines of resources and funding, to further promote collaboration, standardization and scientific validity and understanding of the current protocols of participating banks are required. A survey was sent to brain banks, identified by an Internet search, to investigate operational protocols, case characterization, cohort management, data collection, standardization, and degree of collaboration between banks. The majority of the 24 banks that returned the survey have been established for more than 20 years, and most are affiliated with a regional network. While prospective donor programs were the primary source of donation, the data collected on donors varied. Longitudinal information assists case characterization and enhances the analysis capabilities of research. However, acquiring this information depended on the availability of qualified staff. Respondents indicated a high level of importance for standardization, but only 8 of 24 considered this occurred between banks. Standard diagnostic criteria were not achieved in the classification of controls, and some banks relied on the researcher to indicate the criteria for classification of controls. Although the capacity to collaborate with other banks was indicated by 16 of 24 banks, this occurred infrequently. Engagement of all brain banks to participate toward a consensus of diagnostic tools, especially for controls, will strengthen collaboration.
机译:大脑库继续为神经和精神疾病的研究做出重大贡献。当前研究的复杂性和范围增加了对特征明确的案例的需求,以及对更大的队列和必要策略的需求,例如建立基于地区的银行网络。尽管各个脑库已经制定了在资源和资金范围内满足研究人员需求的协议,但要进一步促进协作,标准化和科学有效性,还需要了解参与银行的当前协议。已通过互联网搜索将调查发送到大脑银行,以调查操作协议,案例特征,队列管理,数据收集,标准化以及银行之间的协作程度。返回调查的24家银行中,大多数已经成立了20多年,并且大多数都隶属于区域网络。虽然预期的捐助者计划是主要的捐助来源,但收集的有关捐助者的数据却有所不同。纵向信息有助于案例表征并增强研究的分析能力。但是,获取此信息取决于合格人员的可用性。受访者表示对标准化的重视程度很高,但24个受访者中只有8个认为这发生在银行之间。在对照的分类中没有达到标准的诊断标准,一些银行依靠研究人员指出对照的分类标准。尽管24家银行中有16家表明了与其他银行合作的能力,但这种情况很少发生。促使所有大脑库参与以达成诊断工具(尤其是控制手段)的共识,将加强协作。

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