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.
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.
|Pilkonis, Paul A; Yu, Lan; Dodds, Nathan E et al. (2014) Validation of the depression item bank from the Patient-Reported Outcomes Measurement Information System (PROMIS) in a three-month observational study. J Psychiatr Res 56:112-9|
|Tucker, Carole A; Bevans, Katherine B; Teneralli, Rachel E et al. (2014) Self-reported pediatric measures of physical activity, sedentary behavior, and strength impact for PROMIS: conceptual framework. Pediatr Phys Ther 26:376-84|
|Fries, James F; Lingala, Bharathi; Siemons, Liseth et al. (2014) Extending the floor and the ceiling for assessment of physical function. Arthritis Rheumatol 66:1378-87|
|Junghaenel, Doerte U; Schneider, Stefan; Stone, Arthur A et al. (2014) Ecological validity and clinical utility of Patient-Reported Outcomes Measurement Information System (PROMIS®) instruments for detecting premenstrual symptoms of depression, anger, and fatigue. J Psychosom Res 76:300-6|
|Ravens-Sieberer, Ulrike; Devine, Janine; Bevans, Katherine et al. (2014) Subjective well-being measures for children were developed within the PROMIS project: presentation of first results. J Clin Epidemiol 67:207-18|
|Tucker, Carole A; Bevans, Katherine B; Teneralli, Rachel E et al. (2014) Self-reported pediatric measures of physical activity, sedentary behavior, and strength impact for PROMIS: item development. Pediatr Phys Ther 26:385-92|
|Buckner, Tyler W; Wang, Jichuan; DeWalt, Darren A et al. (2014) Patterns of symptoms and functional impairments in children with cancer. Pediatr Blood Cancer 61:1282-8|
|Menard, Johanna C; Hinds, Pamela S; Jacobs, Shana S et al. (2014) Feasibility and acceptability of the patient-reported outcomes measurement information system measures in children and adolescents in active cancer treatment and survivorship. Cancer Nurs 37:66-74|
|Lyon, Debra; McCain, Nancy; Elswick, R K et al. (2014) Biobehavioral examination of fatigue across populations: report from a P30 Center of Excellence. Nurs Outlook 62:322-31|
|Forrest, Christopher B; Bevans, Katherine B; Pratiwadi, Ramya et al. (2014) Development of the PROMIS ® pediatric global health (PGH-7) measure. Qual Life Res 23:1221-31|
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