Today, March 25, 2016, is designated as National Cerebral Palsy Awareness Day by the U.S. Congress and we wanted to bring some good news to members whose loved ones also suffer from cerebral palsy (CP) in addition to hydrocephalus (there is a high co-morbidity rate for CP with hydrocephalus). The Hydrocephalus Clinical Research Network (HCRN) was founded in 2006 to galvanize clinician researchers to develop an evidence base for treatments, test new treatments and improve outcomes through multi-center clinical research. Having hydrocephalus can result in emergency and life threatening episodes and there is no cure. Having cerebral palsy means that you may require life long treatments from therapy to surgery to manage a host of issues including gross and fine motor skills, breathing, swallowing, vision, speech, skeletal alignment issues and pain. Cerebral Palsy isn’t progressive but the secondary issues can get progressively worse over time. Like hydrocephalus, the need for a strong evidence base and improved treatments and outcomes is deeply needed for cerebral palsy.
Our former board chair and co-founder of Hydrocephalus Clinical Research Network (HCRN), Paul Gross, has an eleven-year-old son, William, who has both hydrocephalus and cerebral palsy. While Paul focused his initial energies on the formation of HCRN, he later came to understand the progressive nature of CP, despite the fact that its cause was a one-time event from his son William’s premature birth. Last year, Paul founded the Cerebral Palsy Research Network (CPRN) to apply the same types of multi-center, clinical research techniques used by HCRN to CP. Fast forward one year and CPRN is getting ready to pilot its cerebral palsy registry which will be used to characterize the patient population treated at various centers and plan future high-quality research. CPRN has signed up to 20 charter member sites to participate in its CP registry. The group has already submitted a proposal to the Patient Centered Outcomes Research Institute (PCORI) and hopes to conduct a comparative effectiveness trial for the most common surgical interventions for cerebral palsy. Dr. John Kestle, chairman and co-founder of HCRN, is a member of the CPRN advisory board.
So on this day for Cerebral Palsy national awareness, we are proud to be supporters of CPRN and see its founders leveraging their knowledge and devoting energy to a condition that many people with hydrocephalus also suffer from. Good luck to Paul, John and the founding members of CPRN as they build the network and continue with much needed research for all of those who have cerebral palsy.