The National Person-Centered Assessment Resource (PCAR)

描述（由申请人提供）：国家以人为本的评估资源（PCAR）主要研究者：大卫切拉博士及其五个研究中心，西北大学（NU）提出完善和维持研究资源基础设施，这将教育和使研究人员和其他感兴趣的卫生专业人员能够使用和解释以人为本的健康结果。以人为中心的健康结果是由个体研究参与者或患者报告或执行的结果，并且对该参与者的生活质量具有重要意义。我们将此资源称为国家以人为本的评估资源，或PCAR。具体来说，PCAR将支持四个测量信息系统的使用和增强，这些系统目前作为单独的NIH项目获得资助：（PROMIS（R））; NIH神经和行为功能评估系统神经病学生活质量测量系统（Neuro-QoL）;和成人镰状细胞生命质量测量信息系统（ASCQ-Me）。在我们的六个性能站点（西北大学、加州大学洛杉矶分校、加州大学圣地亚哥分校、北卡罗来纳州大学、匹兹堡大学和美国研究院），我们拥有执行RFA CA-13 - 008中指定任务的所有必要能力。这些能力包括心理测量学、调查研究、生物统计学、人口统计学、软件设计和维护、电子数据采集和安全存储、技术支持、卫生信息技术整合、教育方法、网站设计、传播和实施方法、营销和通信以及业务发展。PCAR将为这四个测量信息系统的自动化使用提供一个集成平台。PCAR平台已经兼容各种信息收集模式（包括基于网络/移动设备的输入、非数字纸质源数据等）。在资助期间，我们将继续维持这个平台及其周围的教育和统计服务，采用收费服务模式，支持免费和开放分发静态，可下载的措施以及管理，评分和解释工具。PCAR还将被设计为允许资源用户（即，与资源无关的外部研究人员和临床医生）一起或单独访问和使用四个系统中的任何一个，并定制使用以满足特定的研究需求，同时安全地捕获和传输参与者数据。这一广阔的国家PCAR愿景将通过围绕一个可持续的研究资源来实现，该资源位于NU并已投入运营（每年的前NIH PCAR收入接近100万美元），并具有统计，外展和管理方面的核心支持专业知识，包括项目管理和业务开发。

DESCRIPTION (provided by applicant): The National Person-Centered Assessment Resource (PCAR) Principal Investigator: David Cella, PhD with its five subcontract sites, Northwestern University (NU) proposes to refine and sustain a Research Resource infrastructure that will educate and enable researchers and other interested health professionals on the use and interpretation of person-centered health outcomes. Person-centered health outcomes are those that are reported or performed by an individual research participant or patient, and that have importance to the quality of life of that participant. We refer to this resource as The National Person-Centered Assessment Resource, or PCAR. Specifically, PCAR will support the use and enhancement of four measurement information systems, currently funded as separate NIH programs: The Patient Reported Outcomes Measurement Information System(R) (PROMIS(R)); The NIH Toolbox for Assessment of Neurological and Behavioral Function (NIH Toolbox); The Neurology Quality of Life Measurement System (Neuro-QoL); and The Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). Across our six performance sites (Northwestern University, University of California at Los Angeles, University of California at San Diego; University of North Carolina, University of Pittsburgh, and American Institutes of Research), we possess all of the necessary capabilities to perform the tasks designated in RFA CA-13-008. These capabilities include psychometrics, survey research, biostatistics, population statistics, software design and maintenance, electronic data capture and secure storage, technical support, health information technology integration, educational methods, website design, dissemination and implementation methods, marketing and communication, and business development. PCAR will provide an integrated platform for automated use of these four measurement information systems. The PCAR platform is already compatible with various modes of information collection (including web/mobile-based entry, non-digital paper source data, and others). During the funded period, we will move to sustain this platform and the educational and statistical services around them, under a fee-for-service model that will support free and open distribution of static, downloadable measures as well as administration, scoring, and interpretation tools. PCAR will also be designed to allow resource users (i.e., external researchers and clinicians unaffiliated with the resource) to access and use any of the four systems together or in isolation and tailor use to meet the specific study needs, while capturing and transmitting participant data securely. This expansive National PCAR vision will be realized by surrounding a sustainable Research Resource, located at NU and already operational (with annual ex-NIH PCAR revenues approaching $1,000,000), with core supporting expertise in statistics, outreach, and administration, including project management and business development.