The PEPR Consortium will include an Infrastructure and Opportunities Fund that will be managed by a grantee. In this application, we describe the activities that the Child-Centered Outcomes in Practice and Research (COPR, pronounced ?copper?) Center of Excellence would undertake to steward the IOF efficiently under the direction of NIAMS and the PEPR Steering Committee. As IOF administrator, COPR would: (Activity 1) establish an administrative infrastructure that efficiently manages the IOF and supports the PEPR Steering Committee; (Activity 2) manage IOF Funds ensuring that they are disbursed and monitored in accordance with the decisions of the Steering Committee and NIAMS; (Activity 3) implement procedures for interacting with IOF recipients; and, (Activity 4) provide status reports on IOF projects to the Steering Committee and NIAMS. COPR will expand its Administrative Core, which Dr. Forrest leads, including its Project Management Office to administer the IOF and provide logistical support to the PEPR Steering Committee. COPR's infrastructure benefits from its colocation with the PEDSnet Coordinating Center at the Children's Hospital of Philadelphia (CHOP). Funded as a PCORI clinical data research network, PEDSnet (led by PI Forrest) is the nation's largest children's hospital research network, manages the EHR and PRO data for 4.5 million children, administers numerous sub-contracts with other institutions, and coordinates research projects. COPR will require that each IOF recipient identify a project manager, who will report on project progress on a monthly basis. On a quarterly basis, IOF recipients will produce written project reports, which will address progress toward meeting milestones and deliverables, as well as challenges. The latter will be evaluated regarding the need for assistance from COPR's Informatics and Methodology core. In addition to reporting on project progress, IOF recipients will address compliance with human subjects policies and procedures, and will provide institutional review board communications, such as IRB protocols and approvals, to COPR to ensure documentation of appropriate ethical oversight. The COPR PMO will manage an IOF dashboard, which will summarize, for example, funds flow (amounts available, committed, and expended), progress toward milestones, talk given, and manuscript published. On a quarterly basis, COPR will summarize the status of each IOF project. Both the dashboard and the quarterly reports will be made available to the Steering Committee and NIAMS. Dr. Forrest will lead the IOF. He is a pediatrician, chaired the PROMIS Executive Committee (2009-2014), and was Program Chair for the Inaugural PROMIS Health Organization scientific meeting, May 2015. He has a strong record of leadership to advance the mission of PROMIS. Forrest and the entire COPR team would welcome the opportunity to serve PROMIS as the administrator of the PEPR IOF.
| Jones, Conor M; Baker, Justin N; Keesey, Rachel M et al. (2018) Importance ratings on patient-reported outcome items for survivorship care: comparison between pediatric cancer survivors, parents, and clinicians. Qual Life Res 27:1877-1884 |
