We propose to provide, improve and support a National Person Centered Assessment Resource (PCAR) for use by the research and clinical community. Within the Research Resource, we propose three specific aims: 1) Provide a state-of-the-art, centralized resource to enable the preparation, downloading and administration of the complete portfolio of PCAR instruments;2) Improve the resource by enhancing usability, increasing system robustness, and facilitating mechanisms for a changing funding structure;and 3) Support existing and new resource users. To accomplish these aims, we will leverage our existing system, Assessment Center, providing a central resource for all the PCAR instrument systems, project set-up and administration software, and related educational materials needed for appropriate use. We will enhance and sustain the existing integration of PROMIS, NIH Toolbox, and Neuro-QoL in Assessment Center, and incorporate ASCQ-Me so that users of PCAR may include these measures into their research and practice. Our approach will enable an economical and efficient integration of these four NIH-funded measurement systems. Our solution will require little or no user customization during subsequent data collection. It will also allow for the integration of legacy and custom measures. All measures may be seamlessly administered to study participants via a variety of platforms and modalities. Improvements to the measurement system will be made to ensure ongoing sustainability by improving usability, enhancing system robustness and supporting a changing funding structure. To maximize benefit and function, the resource will seek the input of the PCAR Core stakeholders as well as system users throughout the improvement process. Members of the resource will provide in-depth support to users through communication, documentation and software channels. The Research Resource will facilitate the training of PCAR users alongside the Outreach Core and disseminate new statistical and psychometric findings produced by the Statistical Core. Staff will work closely with and draw from the PCAR Cores to make available scientific and technical expertise to the person-centered outcomes user community. This collaboration with Cores includes initiatives to ensure efforts are productive and solutions meet user needs and expectations. The Research Resource will look to the PCAR Steering Committee for prioritization of direction on technology improvement work and to the Administrative Core to assist in the execution of the business plan to ensure that it adheres to shifting scientific and technical needs. The experience and expertise of Research Resource team is unmatched. Our team includes PCO scientists, software developers, usability experts, web designers, project managers and communications specialists who have worked collaboratively and cohesively to provide, improve and support PCAR tools for nearly a decade. Through the aims of this grant, the Research Resource will enable a comprehensive, accessible and sustainable National PCAR extending beyond the funded period.
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