Cardiovascular Disease and Diabetes Cohorts Trusted Research Environment (CVDD Cohorts TRE)

心血管疾病和糖尿病队列可信研究环境 (CVDD Cohorts TRE)

• 批准号: MR/X013928/1
• 负责人: Cathie Sudlow
• 金额: $ 99.78万
• 依托单位: Health Data Research UK
• 依托单位国家: 英国
• 项目类别: Research Grant
• 财政年份: 2022
• 资助国家: 英国
• 起止时间: 2022 至 无数据
• 项目状态: 已结题
• 来源: https://gtr.ukri.org/projects?ref=MR%2FX013928%2F1
• 关键词: Cardiovascular; Disease; Diabetes; Cohorts; Trusted

There are many studies across the UK that collect detailed information about patients with particular diseases and aim to follow their health over many years. These studies are called cohorts. They allow researchers to study the causes of diseases, better understand how they affect patients, and develop new approaches for diagnosis and treatment. With their consent, these studies collect data directly from patients (using questionnaires and measurements) and from specialist hospital and clinic information systems, including imaging scans. They may also collect blood samples for laboratory measurements and information from mobile phone apps and monitoring devices worn by the patients taking part in the study. All of this information is collected into a database. It is particularly valuable for research analyses when combined with data about the health of the patients taking part before they developed the disease and during follow up over many years after their diagnosis. This health data can be obtained from databases collected and held by national NHS organisations, including data about hospital visits, medicines dispensed from pharmacies and death certificates. Obtaining information from these national databases is challenging, time-consuming, costly and - as a result - not always successful. It involves understanding which data are available from which NHS organisation, completing complex applications and obtaining the approval of each relevant organisation. Cohorts also need to provide a secure environment to receive and hold the data, link it together with the other study data, and provide safe, secure access to researchers to conduct their research analyses. This proposal aims to provide a single platform to overcome these challenges for UK-wide cohorts of patients with diseases of the heart and circulation (so-called 'cardiovascular diseases', such as heart attacks, heart failure and stroke) and diabetes. A dedicated, experienced team will coordinate applications and approvals for cohorts to obtain data from national NHS databases. A secure platform will be provided by a carefully selected, specialist provider to hold all the data collected by each cohort and link it with the additional data from national NHS databases. Specialist health data scientists will provide support for the cohorts in managing, checking, interpreting and analysing this additional linked NHS data. Data from each cohort will be held in a separate, secure space within the platform. Researchers approved to carry out analyses of cohort study data will not take data out of the platform but instead will access it remotely within the platform via a secure log in. To protect the privacy of the patients taking part, all information from which they could be identified (for example name, exact date of birth and NHS number) will be held securely in a separate part of the platform. This identifiable information will only be accessible for essential purposes by a very small number of named cohort study staff. Researchers will not access any of this identifiable information. The platform will also provide specialist tools for the combined analysis of the many different types of data collected by each cohort. This single platform will allow researchers to answer crucial research questions to improve the care of patients with cardiovascular diseases and diabetes much more quickly, more securely, and at lower cost than is currently the case. In the future it could be expanded to support research on cohorts of patients with a wide range of other diseases.

英国有许多研究收集有关特定疾病患者的详细信息，并旨在遵循多年的健康。这些研究称为队列。他们允许研究人员研究疾病的原因，更好地了解他们如何影响患者，并开发新的诊断和治疗方法。在他们的同意下，这些研究直接从患者（使用问卷和测量结果）以及专科医院和临床信息系统（包括成像扫描）中收集数据。他们还可以收集血液样本，以进行实验室测量和手机应用程序的信息，并监视参加研究的患者所穿的手机。所有这些信息都收集到数据库中。当与有关患者在患上这种疾病之前和诊断后多年的随访期间，有关患者的健康状况的数据结合在一起时，这对于研究分析特别有价值。可以从国家NHS组织收集和持有的数据库中获得此​​健康数据，包括有关医院就诊的数据，从药房中分配的药物和死亡证书。从这些国家数据库中获取信息是具有挑战性的，耗时的，昂贵的，因此 - 并非总是成功的。它涉及了解哪些数据可从哪些数据中获得，从而从哪些数据获得，完成复杂的应用程序并获得每个相关组织的批准。队列还需要提供一个安全的环境，以接收和持有数据，将其与其他研究数据联系起来，并提供与研究人员进行安全访问以进行研究分析的安全访问。该提案旨在提供一个平台，以克服整个英国心脏和血液疾病患者的挑战（所谓的“心血管疾病”，例如心脏病发作，心力衰竭，心脏衰竭和中风）和糖尿病。一个专门的，经验丰富的团队将协调同伙的申请和批准，以获取来自国家NHS数据库的数据。一个安全的平台将由精心挑选的专家提供商提供，以持有每个队列收集的所有数据，并将其与来自国家NHS数据库的其他数据链接。专业的健康数据科学家将为管理，检查，解释和分析此其他链接的NHS数据提供支持。来自每个队列的数据将在平台内的单独安全空间中保存。被批准进行队列研究数据分析的研究人员不会将数据从平台中取出，而是通过安全的登录在平台内访问该数据。为了保护参加参与的患者的隐私，可以从姓名中识别出的所有信息（确切的出生日期和NHS编号）将在平台的另一个平台中安全地保存。这些可识别的信息只能通过少数命名的队列研究人员来访问基本目的。研究人员将无法访问任何可识别的信息。该平台还将提供专业工具，以对每个队列收集的许多不同类型的数据进行组合分析。这个单一平台将使研究人员能够回答至关重要的研究问题，以更快，更安全，更低的成本来改善心血管疾病和糖尿病患者的护理。将来，它可能会扩展，以支持对许多其他疾病的患者的研究。