Research Project
9013720
DESCRIPTION (provided by applicant): The Patient-Reported Outcomes (PROs) Measurement Information System (PROMIS), a highly successful NIH Roadmap initiative to standardize the assessment of PROs across chronic diseases, was created by the PROMIS Network - a consortium of grantees in collaboration with the NIH and a Scientific Advisory Board. This application is to design and implement the PROMIS Network Center (PNC) to: (1) facilitate the seamless functioning of the entire PROMIS Network; (2) provide scientific expertise to address further research and development of PROMIS item banks, software, and user support; and (3) establish public/private partnerships that will sustain PROMIS after 2013. To accomplish these objectives we propose three, corresponding, functional cores: Managerial, Scientific, and Sustainability. Responsibilities of the Managerial Core include effecting a smooth transition between the first and second funding cycle of PROMIS; supporting all PROMIS Network internal and external communications and collaborations; and guiding the development, implementation and modification of the PROMIS Network Strategic Plan and Research Agenda (SPRA). The Scientific Core will participate in research to resolve difficult assessment issues; coordinate multi-site, multi-protocol data collection and transfer; and develop and update standard research protocols (including procedures for establishing and implementing collaborations between the PROMIS Network and other entities). The Sustainability Core will form alliances between the PROMIS initiative and institutes across NIH; academic research partners; other government agencies; the pharmaceutical, biotechnology and device manufacturers industries; healthcare provider associations; national healthcare quality initiatives; and other consumers of health indicator measures or audiences for patient-centered health outcomes. These alliances will inform the SPRA and will form the basis of Public/Private partnerships that will sustain PROMIS. The Sustainability Core will be responsible for the design of the external PROMIS website and for communication campaigns designed to raise awareness about PROMIS on the part of the Federal government and all consumers of health outcome data.
