Conference will establish patient-centered research agenda for cerebral palsy
The Cerebral Palsy Research Network (CPRN) and its partner, CP NOW Foundation, received exciting news that their joint grant application to Patient-Centered Outcomes Research Institute (PCORI), requesting $50,000 to host a workshop to bring together people with CP, parents/caregivers, and researchers from all over the country, was approved for funding!
Partners in research for cerebral palsy
The planned meeting is an important step to allow the organizations to discuss research priorities in depth and set the goal for the future direction for CP research that will best benefit the CP community from multiple perspectives.
The conference grant supports four activities to accomplish this goal:
- Conduct a series of online webinars to educate patients, caregivers and clinicians about patient registries, clinical trial design and comparative effectiveness research, and quality networks;
- Collectively build and distribute a survey for the broader patient and provider community to provide input into the research priorities for CP;
- Convene a meeting to synthesize the survey data, set a comparative effectiveness research (CER) and quality agenda and establish an engaged team of patients, clinicians and stakeholders;
- Publish a whitepaper outlining the broader community’s shared clinical comparative research and quality agenda for cerebral palsy.
The differentiator that will hopefully set this apart from other CP research efforts is that it will include the voices and perspectives of ALL members of the CP community: people with cerebral palsy, parents, caregivers, clinicians and researchers. This collaborative approach will allow for a meaningful and targeted research agenda to improve outcomes for people with CP.
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Four additional Cerebral Palsy Research Network (CPRN) sites have received approval from their respective Institutional Review Boards (IRBs), the body that governs human subject research at a hospital, to enroll patients in our clinical cerebral palsy registry. The lead site for the CPRN Registry, Nationwide Children’s Hospital (NCH), has been enrolling patients in the CPRN Registry since April 2016. The additional sites include:
Children’s of Alabama, Birmingham, AL
Children’s Hospital of Colorado, Denver, CO
Nemours/AIfred I. duPont Hospital for Children, Wilmington, DE
Primary Children’s Hospital, Salt Lake City, UT
Some of these sites will be using CPRN’s REDCap forms to collect patient data, so data collection will begin imminently and some will be using CPRN forms that have been developed by NCH and Texas Scottish Rite Hospital, built into their electronic medical records (EMR) system. Enrollment at sites using the EMR forms will start later because the forms need to be integrated by the hospital information technology staff.
In addition to these four sites and the lead site with IRB approval to collect patient data for the CPRN Registry, four other institutions have submitted the CPRN IRB protocol for approval at their site. CPRN expects to have 10 or more sites approved for the CPRN Registry in the first half of 2017.
Debbie Thorpe, PT, PhD and Mary Gannotti, PT, PhD, co-leaders of the CPRN Adult Registry group, received a grant from the Center on Health Services Training and Research entitled “Health Care Utilization for Musculoskeletal Disorders in Adults with Cerebral Palsy: An Analysis of Medicare Data.” This work will increase our understanding of healthcare utilization (real world care) for adults with cerebral palsy. The results of this study will lay the foundation for a program of research that will assess the quality and value of rehabilitation care for this population, with the ultimate objective of improving the health and quality of life of adults with cerebral palsy.
While this grant is not for a CPRN study, the learning from this study will help shape our patient reported outcomes registry work to seek the most important longitudinal outcomes.