Introduction: The case for de-risking neurodegenerative research and development through highly informative experimental medicine studies early in the disease process is strong. Such studies depend on the availability of genetic as well as high-granularity, longitudinal, phenotypic data in healthy aging individuals who can be recruited into early phase trials on the basis of their perceived dementia risk. Until now the creation of such research infrastructure has been hampered by the lack of expense and time required to gather the rich longitudinal data needed for adequate risk stratification. Dementias Platform UK (DPUK) is a public-private partnership that brings together data from over 40 cohorts in a standardised framework, which represents an until now unavailable opportunity to create such a resource through a streamlined brain health re-contact platform based on existing cohorts, as well as prospectively collected data. Methods and analysis: The DPUK re-contact platform consists of an opt-in (Great Minds, GM) and an opt-out component (Clinical Studies register, CSR). GM requires invited DPUK cohort participants to consent to targeted re-contact at the GM website and then to provide self-reported demographic and medical history information relevant to recruitment into clinical studies. Participants complete prospective browser- and smartphone-based cognitive tests and are given the option for remote genetic and actigraphy testing. The GM data is linked to the retrospective DPUK cohort dataset, including genotypic and longitudinal phenotypic data. The CSR is a solution for cohorts explicitly allowing targeted re-contact. Approved studies provide pre-screening criteria on the basis of the CSR/GM dataset, and individuals meeting these criteria are offered participation directly (GM) or through the parent DPUK cohort (CSR). Descriptive statistics will be used to summarise the outcomes relevant to the number of participants engaged with the register. Its sample size is not defined but is limited by the size of the DPUK parent cohorts. Ethics and dissemination: The database was approved by the South Central - Oxford C Research Ethics Committee, reference 18/SC/0268 on the 27th of June 2018 and amended on the 1st of November 2019. The availability of the Register to researchers will be disseminated through DPUK official communication channels as well as national and international scientific meetings.

中文翻译：

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英国痴呆症平台临床研究和杰出思想者注册：针对性脑健康研究的方案重新联系数据库

简介：在疾病过程早期通过高度有用的实验医学研究来减轻神经退行性研究和开发的风险的理由很强。此类研究取决于健康的衰老个体的遗传以及高粒度，纵向，表型数据的可用性，可以根据他们认为的痴呆风险将其纳入早期试验。到目前为止，由于缺乏足够的费用和时间来收集足够的纵向分层以进行充分的风险分层所需的时间和金钱，阻碍了此类研究基础设施的创建。英国痴呆症平台（DPUK）是一个公私合作伙伴关系，它将来自40多个队列的数据整合到一个标准化框架中，这是迄今为止基于现有人群以及前瞻性收集的数据，通过简化的大脑健康重新联系平台来创建此类资源的一个迄今为止尚不存在的机会。方法和分析：DPUK重新联系平台包括一个选择加入（Great Minds，GM）和一个选择退出组件（Clinical Studies register，CSR）。GM要求受邀的DPUK队列参与者同意在GM网站上进行有针对性的重新联系，然后提供与招募到临床研究有关的自我报告的人口统计学和病史信息。参加者可以完成基于浏览器和智能手机的预期认知测试，并可以选择进行远程遗传和书法测试。GM数据与追溯的DPUK队列数据集相关联，包括基因型和纵向表型数据。CSR是针对明确允许有针对性的重新联系的同类群组的解决方案。批准的研究会根据CSR / GM数据集提供预筛查标准，并且直接（GM）或通过父DPUK队列（CSR）为满足这些标准的个人提供参与。描述性统计数据将用于总结与注册簿参与人数相关的结果。它的样本大小没有定义，但受DPUK父代队列的大小限制。道德规范和传播：该数据库于2018年6月27日获得美国中南部-牛津C研究道德委员会的批准，参考号18 / SC / 0268，并于2019年11月1日进行了修订。