The PROMIS network of clinicians, clinical researchers, and measurement experts is organized around six primary research sites (PRSs) and a statistical coordinating center (SCC), all of whom will work closely with NIH project scientists representing several institutes on this 5-year project.

The PROMIS network comprises four functional components:

Primary Research Sites

The PROMIS network includes six PRSs from across the country: Duke University, Stanford University, Stony Brook University, University of North Carolina at Chapel Hill, University of Pittsburgh, and University of Washington in Seattle. A PRS is an institution or organization responsible for completing its approved independent research project(s) as proposed in the original application, developing and shaping the PROMIS core questionnaires in cooperation with other PRSs and the Statistical Coordinating Center (SCC), collecting data for network-based projects, and performing statistical analyses of pooled data as needed.

Statistical Coordinating Center

The PROMIS network has one central SCC—the Center on Outcomes, Research and Education (CORE), operated by Evanston Northwestern Healthcare and Northwestern University Medical School. SCC provides and manages a secure, customizable, coordinated data management system for the collection, storage, and analysis of data collected by the PRSs. It coordinates, facilitates, and maintains information exchange and dissemination across scientific, administrative and advisory tiers of the PROMIS network. The SCC also is working collaboratively with the PROMIS network to develop a public-private partnership to sustain the network beyond the project period. In collaboration with the PRSs and the Steering Committee, SCC is developing the PROMIS core questionnaires to be administered across all PRSs, in both paper and computer-based formats. SCC is primarily responsible for analyzing the data using item response theory (IRT) modeling and other sophisticated psychometric approaches and for creating item banks. The item banks will serve as the foundation for the further development of tailored short-form instruments and computerized adaptive testing (CAT) techniques. The item banks, short forms, and CAT will be made widely available to clinical researchers as a Web-based application (or downloadable to computer devices), and SCC will develop training for clinical researchers in the use of this resource.

NIH Scientific Staff

Several NIH scientists are involved in the PROMIS network, and have overall responsibility for program oversight and stewardship. Project scientists elected a Steering Committee chair, serve as voting members of the Steering Committee, and carry out continuous review of all activities to ensure objectives are being met. NIH scientific staff members also serve the as scientific liaison between the awardees and other NIH program staff and between the PROMIS network and other NIH-sponsored research collaborations

Each grant (PRS/SCC) is also assigned an NIH Science Officer. The Science Officer has substantial scientific/programmatic involvement during the conduct of this activity through technical assistance, advice, and coordination above and beyond normal program stewardship for grants. This involvement includes functioning as a partner with the principal investigators and providing significant input in the planning and conduct of the network and independent research projects. Among many roles, science officers will work with the principal investigators in finalizing the set of PROMIS core items to be tested, determining testing methodology, planning for data analysis, interpreting data, designing questionnaires and computer interfaces, reviewing data collection protocols, and, when appropriate, coauthoring manuscripts for publication.

Scientific Advisory Board (SAB)

The Scientific Advisory Board (SAB) oversees coordination among funded projects and evaluates their progress toward the goals of the PROMIS initiative. The SAB will use its knowledge of the activities of all the participating facilities to ensure adequate investigation, communication, and sharing, and it will evaluate and make recommendations regarding coordination of awardee activities as well as related activities that may be developed in the future.

Appointed by NIH, the SAB consists of approximately 10 scientists (advisors) who are not closely affiliated with any of the funded sites (i.e., not co-investigators or otherwise contributing a major effort on an application). NIH selected these advisors for their broad expertise in relevant topics. SAB members provide their expert advice, as individual members, to the PROMIS Steering Committee regarding study objectives, strategies, designs, data collection instruments, analysis plans, and results. SAB provides suggestions about priorities for design and analyses, methods for disseminating results, ways of publicizing activities of the network, and opportunities for research collaborations.

SAB meets independently at least once each year.