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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Morgan, Esi M; Mara, Constance A; Huang, Bin et al. (2017) Establishing clinical meaning and defining important differences for Patient-Reported Outcomes Measurement Information System (PROMIS®) measures in juvenile idiopathic arthritis using standard setting with patients, parents, and providers. Qual Life Res 26:565-586
Moinpour, Carol M; Donaldson, Gary W; Davis, Kimberly M et al. (2017) The challenge of measuring intra-individual change in fatigue during cancer treatment. Qual Life Res 26:259-271
Zhao, Yue (2017) Impact of IRT item misfit on score estimates and severity classifications: an examination of PROMIS depression and pain interference item banks. Qual Life Res 26:555-564
Hedrick, Traci L; Harrigan, Amy M; Thiele, Robert H et al. (2017) A pilot study of patient-centered outcome assessment using PROMIS for patients undergoing colorectal surgery. Support Care Cancer :
Brandon, Timothy G; Becker, Brandon D; Bevans, Katherine B et al. (2017) Patient-Reported Outcomes Measurement Information System Tools for Collecting Patient-Reported Outcomes in Children With Juvenile Arthritis. Arthritis Care Res (Hoboken) 69:393-402
Stephens, Helen E; Joyce, Nanette C; Oskarsson, Björn (2017) National Study of Muscle Cramps in ALS in the USA. Amyotroph Lateral Scler Frontotemporal Degener 18:32-36
Lee, Augustine C; Driban, Jeffrey B; Price, Lori Lyn et al. (2017) Responsiveness and Minimally Important Differences for 4 Patient-Reported Outcomes Measurement Information System Short Forms: Physical Function, Pain Interference, Depression, and Anxiety in Knee Osteoarthritis. J Pain 18:1096-1110
Howell, Carrie R; Thompson, Lindsay A; Gross, Heather E et al. (2017) Association of consistently suboptimal quality of life with consistently poor asthma control in children with asthma. Ann Allergy Asthma Immunol 119:562-564.e1
Magnus, Brooke E; Liu, Yang; He, Jason et al. (2016) Mode effects between computer self-administration and telephone interviewer-administration of the PROMIS(®) pediatric measures, self- and proxy report. Qual Life Res 25:1655-65
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

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