Leads: Carole A. Tucker (SHOnet)
Parent Leads: Hank Chambers (Rady Children’s Hospital, San Diego), Jill Chambers (no affiliation)
Co-Lead(s): Steve Nelson (Tulane)
In the past 5 years, there has been a large national effort to develop a research agenda focused on individuals with Cerebral Palsy (CP). The NINDS (National Institute of Neurological Disorders and Stroke) has completed the development of CP-specific CDEs, several NIH-led workshops have been conducted focusing on a CP research agenda, and several efforts have emerged to develop CP data registries. Our RIG would provide a common ground to develop inter-network research efforts in CP for both children and adults.
The Shriners Hospitals for Children (SHC) has funded a 3-year (2015-2017) project to build a Learning Health System across their network of 22 pediatric specialty care (rehabilitation and burn care) sites. This system, Shriners Health Outcomes Network (SHOnet) contains 5 years of data across all diagnoses seen in the SHC network including over 40,000 children with CP. SHOnet has actively engaged researchers, clinicians and other stakeholders in developing a CP research program using SHOnet resources. The Cerebral Palsy RIG is well prepared and highly motivated to expand and develop the CP research agenda with others from outside SHC.
Prioritization of condition-specific research topics:
- The process will involve multiple stakeholders from the CP community: researchers, clinicians, patients, and family members
- An online platform will be used that will allow participants to rank and edit research topics.
- If you would like to take part in this activity, please send us an email at firstname.lastname@example.org