PHORA-Pulmonary Hypertension Outcome Risk Assessment

摘要 该应用程序旨在开发、改进和扩展一个多平台的临床决策支持系统 内科医生的肺动脉高压(PAH)中的CDSS(肺动脉高压) 结果风险评估)，可用于成人和儿童：a)指导治疗决定 B)优化临床试验设计。我们将通过利用几个大型临床试验数据来实现这一目标 多环芳烃已完成试验数据库、正在进行的成人和儿科多环芳烃登记和生物库。建议数 AIMS与多学科的专业小组共同创建CDSS，包括：生物医学工程， 高级PAH、计算机科学(机器学习/数据挖掘)、人机交互和姑息疗法 护理专家。我们的目的是让所有利益攸关方达成共识，从而确保 将Phora接受到实践中。该项目的成功完成将为 前瞻性、多中心元注册中心，其中将针对最佳建模对Phora进行评估 实践干预措施可改善患者的长期预后。最终的目的是传播这一点 资源，以提高这种治疗PAH的效率、疗效和成本效益。

ABSTRACT This application seeks to develop improve and expand a multi-platform clinical decision support system (CDSS) in pulmonary arterial hypertension (PAH) for physicians, PHORA (Pulmonary Hypertension Outcomes Risk Assessment), which can be used in adults and children to: a) guide therapeutic decisions and b) optimize clinical trial design. We will achieve this goal by utilizing clinical trial data from several large databases of completed trials in PAH, ongoing adult and Pediatric PAH registries and Biobanks. The proposed aims co-create the CDSS with a multi-disciplinary group of specialties including: biomedical engineering, advanced PAH, computer science (machine learning/data mining), human computer interaction, and palliative care experts. Our intention is to engage all stakeholders to achieve consensus and thereby assure the acceptance of PHORA into practice. Successful completion of this project will lay the foundation for a prospective, multi-center META-Registry in which PHORA will be evaluated with respect to modeling best practice interventions leading to improved long-term patient outcomes. The ultimate aim is to disseminate this resource so as to improve the efficiency, efficacy, and cost-effectiveness of this treatment for PAH.