Major NIH Roadmap
The Outcomes and Assessment Lab received an NIH Roadmap award (U-01) related to the national PROMIS project. Kessler Foundation�s subcontract on this project is estimated at $1,040,000 over 4 years.
PROMIS is the acronym for Patient Reported Outcomes Measurement Health Information System. Boston University will partner with Kessler Foundation, Shriners Hospitals, the James Haley Veterans Hospital (Tampa) and the James J. Peters (Bronx) VA Medical Center to validate the new PROMIS outcome measurement scales in children and young adults with disabilities. The PROMIS initiative was launched in 2004 as an NIH cross-institute project designed to "re-engineer" the research process. The PROMIS instruments will become state-of-the-science outcome variables within NIH-sponsored clinical trials across all medical populations. Since 2004, the NIH has invested more than $25,000,000 to fund 7 research sites to develop PROMIS outcomes measures. This second round of funding is designed to provide new validation that the measures will work as planned in clinical populations. For PROMIS II, the NIH is investing another $25,000,000 to fund 12 clinical validation sites and 3 network center grants. The PROMIS II network will continue to bring the leading outcome researchers in the country together to conduct the necessary research to demonstrate that the PROMIS measurement system can effectively be utilized in clinical research.
The Boston University grant focuses on children and young adults with disabilities. The team will be responsible for conducting three research studies as well as funding Dr. David Tulsky (along with Dr. Stephen Haley from Boston University) to serve on the PROMIS Steering Committee and provide expertise to NIH, the PROMIS network, and other clinical validation sites. The purpose of Project #1 is to examine the responsiveness of the current PROMIS item banks for children and young adults with cerebral palsy who undergo major musculoskeletal surgeries. PROMIS item banks will be administered pre and post the surgical procedure so that the researchers can document the capability of the instrument to demonstrate change over time. The purpose of Project #2 is to develop a scoring link between current PROMIS pediatric and adult item banks so that the PROMIS measures can be used during this child-adult transition using a similar metric. Major childhood and adult conditions represented in the sampling plan include children and young adults with cerebral palsy, spinal cord injury and traumatic brain injury. Project #3 will evaluate how a sample of the PROMIS item banks work with young adults in relationship to items developed from complimentary projects.
These studies will be critical to demonstrating the utility of the PROMIS item banks in children and young adults with disabilities.