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.

Public Health Relevance

PRO data augment traditional clinical indicators by describing, from a patient's perspective, how patients feel (e.g., pain, fatigue, anxiety) and what they are able to do (e.g., eat, walk or go to work). This application supports research that advances development of a standard system to collect and report PRO data across different sub-groups within the U.S. (populations, diseases, conditions). Such a system would help providers/ policy makers develop more helpful medical treatments/ health programs for the U.S. Population.

National Institute of Health (NIH)
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
Specialized Center--Cooperative Agreements (U54)
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Special Emphasis Panel (ZRG1-RPHB-A (53))
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Serrate-Sztein, Susana
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American Institutes for Research
United States
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Dampier, Carlton; Jaeger, Byron; Gross, Heather E et al. (2016) Responsiveness of PROMIS® Pediatric Measures to Hospitalizations for Sickle Pain and Subsequent Recovery. Pediatr Blood Cancer 63:1038-45
Reeve, Bryce B; Thissen, David; DeWalt, Darren A et al. (2016) Linkage between the PROMIS® pediatric and adult emotional distress measures. Qual Life Res 25:823-33
Schalet, Benjamin D; Hays, Ron D; Jensen, Sally E et al. (2016) Validity of PROMIS physical function measured in diverse clinical samples. J Clin Epidemiol 73:112-8
Cook, Karon F; Jensen, Sally E; Schalet, Benjamin D et al. (2016) PROMIS measures of pain, fatigue, negative affect, physical function, and social function demonstrated clinical validity across a range of chronic conditions. J Clin Epidemiol 73:89-102
Kashikar-Zuck, Susmita; Carle, Adam; Barnett, Kimberly et al. (2016) Longitudinal evaluation of patient-reported outcomes measurement information systems measures in pediatric chronic pain. Pain 157:339-47
Dampier, Carlton; Barry, Vaughn; Gross, Heather E et al. (2016) Initial Evaluation of the Pediatric PROMIS® Health Domains in Children and Adolescents With Sickle Cell Disease. Pediatr Blood Cancer 63:1031-7
Schalet, Benjamin D; Pilkonis, Paul A; Yu, Lan et al. (2016) Clinical validity of PROMIS Depression, Anxiety, and Anger across diverse clinical samples. J Clin Epidemiol 73:119-27
Li, Zheng; Thompson, Lindsay A; Gross, Heather E et al. (2016) Longitudinal associations among asthma control, sleep problems, and health-related quality of life in children with asthma: a report from the PROMIS(®) Pediatric Asthma Study. Sleep Med 20:41-50
Thissen, David; Liu, Yang; Magnus, Brooke et al. (2016) Estimating minimally important difference (MID) in PROMIS pediatric measures using the scale-judgment method. Qual Life Res 25:13-23
Stukenborg, George J; Blackhall, Leslie J; Harrison, James H et al. (2016) Longitudinal patterns of cancer patient reported outcomes in end of life care predict survival. Support Care Cancer 24:2217-24

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