Technology has changed the way we approach medical care: health data is constantly being generated, medical discoveries are progressing more rapidly, and individuals are more connected across the world than ever before. Backpack Health is a global personal health record platform that harnesses the power of technology to connect users to their primary health data sources, the medical community, and researchers. By syncing with existing patient portals, health data can be stored on the Backpack Health platform and easily accessed and controlled by users in one connected interface. Individuals manage and collate their current and past conditions, genetic test results, symptoms, medications, procedures, labs, and other health data. Users are empowered to disseminate their information to clinicians, researchers, foundations, and pharmaceutical and biotechnology companies they connect with through the Backpack Health application. Here, we describe how two rare disease advocacy groups, The Marfan Foundation and Project Alive, utilize Backpack Health to connect with their target populations. Through secure transfer of pseudonymized data, groups can query their members to improve understanding of clinical features and to facilitate meaningful research. Responses to the groups' surveys show strong member engagement with high completion rates and increases in new Backpack Health users when surveys are deployed. Data from these surveys have been published and used to better inform clinical outcomes for treatment trials. By connecting users directly to the foundations, clinicians, researchers, and industry partners working on their condition, Backpack Health is instrumental in fast‐tracking medical discoveries and treatment for rare diseases.

中文翻译：

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Backpack Health 减少了医学界与罕见病患者之间的数据共享障碍

技术改变了我们处理医疗保健的方式：健康数据不断产生，医学发现进展更快，世界各地的个人联系比以往任何时候都更加紧密。Backpack Health 是一个全球个人健康记录平台，利用技术的力量将用户与其主要健康数据源、医学界和研究人员联系起来。通过与现有患者门户同步，健康数据可以存储在 Backpack Health 平台上，用户可以通过一个连接界面轻松访问和控制。个人管理和整理他们当前和过去的状况、基因检测结果、症状、药物、程序、实验室和其他健康数据。用户有权将他们的信息传播给临床医生、研究人员、基金会、以及他们通过 Backpack Health 应用程序连接的制药和生物技术公司。在这里，我们描述了两个罕见疾病倡导组织 The Marfan Foundation 和 Project Alive 如何利用 Backpack Health 与他们的目标人群建立联系。通过安全传输假名数据，小组可以查询其成员以提高对临床特征的理解并促进有意义的研究。对团体调查的回应表明，成员参与度很高，完成率很高，并且在部署调查时新的 Backpack Health 用户有所增加。这些调查的数据已经发表，并用于更好地告知治疗试验的临床结果。通过将用户直接与研究他们病情的基金会、临床医生、研究人员和行业合作伙伴联系起来，