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Online Population-Based Patient Registry to Collect and Share Health-Related Data of Rare Disease Patients

机译:基于在线人口的患者登记处收集和分享罕见疾病患者的健康相关数据

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摘要

Rare diseases, those affecting few patients, are in fact neglected diseases that demand special concern and care. We are constructing an online system to collect health-related data and complaints from rare-disease patients to share that information with stakeholders, thereby facilitating the development of new or improved drugs, treatments, and policies and enhancing the quality of life (QOL) for patients with such diseases. The system will also track and monitor the physical states and conditions of patients, which will facilitate the management of their QOL and improve communication with health professionals.
机译:影响少数患者的罕见疾病实际上是忽视的疾病,需要特别关注和关心。我们正在构建在线系统,从而收集与稀有疾病患者的健康有关的数据和投诉,以与利益相关者分享该信息,从而促进新的或改进的药物,治疗和政策以及提高生活质量(QOL)的发展患者这种疾病。该系统还将跟踪和监控患者的物理状态和条件,这将促进他们的QOL管理并改善与卫生专业人士的沟通。

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