The PROMIS network of clinicians, clinical researchers, and measurement experts is organized around thirteen primary research sites (PRSs) and three centers that provide logistical coordination and support for the PRSs and outreach to external stakeholders (the PROMIS Network Center), expertise in statistics and measurement science to the PRSs (the PROMIS Statistical Center), and support for online or offline dynamic or static data collection (the PROMIS Technical Center). The PRSs and Centers work closely with NIH project scientists representing several NIH Institutes and Centers.
Primary Research Sites
The PROMIS Network includes thirteen PRSs from across the country: Boston University/ University of Michigan, Children’s Hospital of Philadelphia, Cincinnati Children’s Hospital Medical Center, Duke University, Georgetown University, Stanford University, Stony Brook University, University of North Carolina at Chapel Hill, University of Maryland, University of Pittsburgh, University of California, Los Angeles, and University of Washington in Seattle (received two grants). A PRS is an institution or organization responsible for completing its approved independent research project(s), developing and shaping the PROMIS item banks and core questionnaires in cooperation with other PRSs and scientists from the Centers (PSC, PNC, and PTC), and collecting data and conducting analyses to validate PROMIS.
Coordinating Centers
PROMIS® Statistical Center
The PROMIS Statistical CenterSM (PSC) advises and educates members of the network on a range of qualitative and quantitative research methods, develops and implements processes to ensure data quality; provides leadership in the development of PROMIS approved translations of new and extant domains; assists in the development and implementation of protocols; provides consultation on research design, sample size, sampling plans and power estimates for item bank testing; provides psychometric and statistical support for the network; and works collaboratively with the PROMIS Network to create sustainability.
PROMIS® Network Center
The PROMIS Network Center (PNC) facilitates the development of the PROMIS Strategic Plan and Research Agenda (SPRA) and implements this plan through management, coordination, and the provision of scientific consultation regarding PRO research design and analysis. The PNC is responsible for leveraging PROMIS as a public good through communications, dissemination and business development functions with a focus on supporting the long-term viability and sustainability of the PROMIS Network.
PROMIS® Technical Center
The PROMIS Technical Center (PTC) will provide and manage a secure, customizable data collection, management, and reporting system (Assessment Center); serve as a cost-effective, efficient technological resource for the PROMIS Network; conduct outreach efforts through publications, presentations, and educational tools to increase the research community’s interest in the PROMIS measures and Assessment Center as a platform for data collection; and work collaboratively with the PROMIS network to create sustainability. Studies can include measures within the Assessment Center library as well as custom instruments created or entered by the researcher. With appropriate permissions, any PROMIS measure can be downloaded for administration on paper or be included in an online study.
NIH Scientific Staff
Each primary research site and center is assigned an NIH Science Officer. The NIH Science Officers serve as voting members of the PROMIS Steering Committee, and carry out continuous review of all activities to ensure objectives are being met. They also serve as the scientific liaison between the awardees and other NIH program staff and between the PROMIS Network and other NIH-sponsored research collaborations
PROMIS is funded under a cooperative agreement mechanism and so the PROMIS Science Officers have 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.