This proposed Statistical Coordinating Center (SCC) for the Patient Reported Outcomes Measurement Information System (PROMIS) will provide and manage a secure, customizable data collection, management and reporting system, provide leadership and expertise in psychometric and statistical analyses; create item banks for health status domains that have relevance across a variety of chronic diseases; develop a dynamic system to administer computer adaptive tests (CAT); develop training materials for clinical researchers who will use the item banks and CAT system; and work collaboratively with the PROMIS network to develop a sustained public-private partnership. Our SCC investigators are international leaders in the development and evaluation of PRO instruments and item banks including related software for item-banking, CAT, fixed assessments, scoring and reporting in multiple languages; the design, implementation and coordination of clinical and survey research studies; and the development and application of psychometric and statistical methods for analysis of self-report data. We have already developed operational item banks for several health-related quality of life (HRQL) domains using item response theory (IRT). We have tested this system in numerous patient populations and using multiple platforms (e.g., web-based, touch screens, Integrated Voice Response (IVR)). Thus, we will provide initial PROMIS software for primary research sites (PRS) and network-based data collection from the start of the funded period. Our software includes a simulation mode that will be useful in evaluating the impact of changing IRT models, calibrations and other CAT conditions. Our proposed project team has extensive expertise in conducting pooled data analysis using IRT and other psychometric and statistical methods. We are positioned to provide leadership of PROMIS activities and advance the science behind building and applying valid and clinically useful item banks. The scientific strength of our psychometric and statistical investigators, our proven capabilities in data management and software development, and our track record of interdisciplinary and inter-institutional collaboration uniquely equip our proposed SCC to accomplish and extend our contribution beyond enabling and coordinating large-scale data collection and analysis. Using five functional teams comprised of experienced investigators and specialists, we will coordinate, adjudicate and activate input from the Steering Committee and the PRS investigators, and will include advisory input from """"""""stakeholders"""""""" including academic clinical trialists, government, industry and patients. This collaborative effort will ensure the success of the PROMIS initiative.

Agency
National Institute of Health (NIH)
Institute
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
Type
Research Project--Cooperative Agreements (U01)
Project #
1U01AR052177-01
Application #
6878222
Study Section
Special Emphasis Panel (ZRG1-RPHB-F (50))
Program Officer
Ader, Deborah N
Project Start
2004-09-28
Project End
2009-07-31
Budget Start
2004-09-28
Budget End
2005-07-31
Support Year
1
Fiscal Year
2004
Total Cost
$1,353,759
Indirect Cost
Name
Northshore University Healthsystem Research Institute
Department
Type
DUNS #
154538107
City
Evanston
State
IL
Country
United States
Zip Code
60201
Blackwell, Courtney K; Wakschlag, Lauren S; Gershon, Richard C et al. (2018) Measurement framework for the Environmental influences on Child Health Outcomes research program. Curr Opin Pediatr 30:276-284
Reeve, Bryce B; Edwards, Lloyd J; Jaeger, Byron C et al. (2018) Assessing responsiveness over time of the PROMIS® pediatric symptom and function measures in cancer, nephrotic syndrome, and sickle cell disease. Qual Life Res 27:249-257
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
Bevans, Katherine B; Riley, Anne W; Landgraf, Jeanne M et al. (2017) Children's family experiences: development of the PROMIS® pediatric family relationships measures. Qual Life Res 26:3011-3023
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
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 25:3103-3112
Khanna, Dinesh; Hays, Ron D; Shreiner, Andrew B et al. (2017) Responsiveness to Change and Minimally Important Differences of the Patient-Reported Outcomes Measurement Information System Gastrointestinal Symptoms Scales. Dig Dis Sci 62:1186-1192
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
Liegl, Gregor; Gandek, Barbara; Fischer, H Felix et al. (2017) Varying the item format improved the range of measurement in patient-reported outcome measures assessing physical function. Arthritis Res Ther 19:66
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

Showing the most recent 10 out of 118 publications