Cerebral Palsy Research Network Blog

Learn about the Power of Patient Registries

Fifth and Final Research CP Webinar airs Tuesday, April 4, 2017 at 8 pm ET

Join Cerebral Palsy Research Network (CPRN) Chairman and Founder Paul Gross and guest speakers, pediatric neurosurgeon Jay Riva-Cambrin, M.D., and Phelan McDermid Syndrome Data Network Principal Investigator (PI) Megan O’Boyle, for an educational presentation on patient registries. Dr. Riva-Cambrin, PI for the Hydrocephalus Clinical Research Network (HCRN) Core Data Project, will share learnings from his 10 years of running a large-scale clinical registry for hydrocephalus. Ms. O’Boyle, PI for the Phelan McDermid Syndrome patient-powered registry will share her insights from her experience running a patient registry where data comes directly from patients and caregivers rather than in the clinical setting. Both speakers will demonstrate the importance and power of participating in research through different types of patient registries — for community members and researchers. It you are not available to watch the webinar live, it will be recorded so you can view it later.

Register for the Patient Registries Webinar now!

Gross, who co-founded HCRN in 2006, will share the plans for two CPRN registries — both a clinical and patient-powered (or community) registry. This webinar is the fifth and last webinar in the Research CP webinar series. Research CP, a PCORI funded initiative to set a patient-centered research agenda for cerebral palsy, will culminate in a in-person workshop in Chicago in June 2017 to synthesize input from the CP community as to what is most important in research. The webinar series, which can be viewed online at the Research CP webinar series page, is a critical component in establishing a common language for clinicians who treat people with CP and the broader CP community including caregivers and people with CP.