Cerebral Palsy Research Network Clinical Registry Update Garey

Cerebral Palsy Research Network Clinical Registry Update Garey Noritz, MD Nationwide Children’s Hospital The Ohio State University CPRN Houston Investigators Meeting May 31 -June 1, 2018 1

Current Status • How many centers currently contributing- 7 • 1 site using EPIC; the rest contributing through REDCap • Jacob will present other technical transfer information 2

Data Capture/IRB • A multidisciplinary group of CP experts created data collection templates to be used at participating sites. • Patient-level data are collected in the course of regular clinical care by leveraging the ability of Electronic Health Records to capture clinical information in a discrete fashion, allowing for data to flow to a research database. • Participating sites transmit deidentified data to a centralized data repository. • The Institutional Review Board of Nationwide Children's Hospital approved this study with waiver of consent, with several institutions relying on this approval; all other institutions had local IRB approval. 3

Center contributions thus far N= 1724 4

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3. TOTALS 919 323 657 158 TOTALS 1134 279 640 125 *Victoria/Ontario/Sweden data from: Howard J, Soo B, Graham HK, Boyd RN, Reid S, Lanigan A, et al. Cerebral palsy in Victoria: Motor types, topography and gross motor function. Journal of paediatrics and child health. 2005; 41(9 -10): 479 -83. 7

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Selected Clinical Data 9

My Takeaways • Once really up and running, the amount of data collected will be huge • Accuracy of data capture and transmission is extremely important • Garbage In, Garbage Out 10