Gerry Nesbitt - Director
Gerry Nesbitt is an informatics innovator specializing in academic clinical research IT. He was previously the Director of Informatics at the University of California, San Francisco. He was responsible for IT on the Epilepsy Phenome/Genome Project, a $15M/5 year NIH funded project and the largest ever epidemiological and genomic study of epilepsy and seizures. He was also the Director of Informatics of the EPI4K study and the Human Epilepsy Project. Prior to this, Gerry was responsible for IT and bioinformatics with the UCSF/Immune Tolerance Network , a NIH funded project that conducts clinical research for autoimmune diseases.
In 2012, Gerry designed and developed CLIRINX, a state-of-the-art web-based data collection system for epilepsy and rare disease clinical research. The CLIRINX system is being used across multiple research projects globally, including Lurie Children's Hospital [the Early Onset Epilepsy Consortium (EOEC), National Infantile Spasms Consortium (NISC), Precision Medicine Initiative and a study of genetic variants associated with heart rhythm (channelopathies) and myocardial function], the Baylor College of Medicine [RIKEE Study and ERGENT Study], Dravet Foundation [Consensus Project], Colorado Children's Hospital [I-SITT Study], the Rett Syndrome Research Trust [OMBD Study], the FamilieSCN2A Clinical Trial Readiness Study, Univ. of Melbourne (Epilepsy Genetics Study and Patient Hub), The Inchstone Project and the Lurie/PCORI LGS Project.
In 2020, Gerry designed/launched the CRID Clinical Research ID, a system used for identifying the same patient across research protocols in rare disease clinical research. The CRID paper was published in 2022.
Gerry Nesbitt - CEO/CTO
Trish Murphy - Clinical Research & Technical
Nishtha Joshi - Clinical Research (Consultant)
Fiona Mulreany - AWS Cloud Infrastructure
Nesbitt G, Murphy P. (2022) CRID - A unique, universal, patient-generated identifier to facilitate collaborative rare disease clinical research. Informatics in Medicine Unlocked, 2022 [link]
A.T. Berg et al. (2020) Nonseizure consequences of Dravet syndrome,KCNQ2-DEE,KCNB1-DEE,Lennox-Gastaut syndrome, ESES: A functional framework. Epilepsy & Behavior (111), Oct. 2020 [link]
G. Nesbitt et al. (2019) Early Life Epilepsy Natural History Project - Advancing knowledge of ultra-rare diseases with the CLIRINX informatics platform. American Epilepsy Society (Abst. 1.238), 2019 [link]
J. Millichap et al. (2019) ERGENT: Early Recognition of Genetic Epilepsy in Neonates. American Epilepsy Society (Abst. 1.39), 2019 [link]
A.T. Berg et al. (2019) Functional Impairments in Young People with Early Life Epilepsies: Influences of Seizures, Medications and Sleep. American Epilepsy Society (Abst. 2.138), 2019 [link]
E. Golbeck et al. (2018) Nocturnal Seizures and Sleep Variability in Children and Young Adults with Dravet Syndrome. American Epilepsy Society (Abst. 2.451), 2018 [link]
E.C. Wirrell et al. (2017) Optimizing the Diagnosis and Management of Dravet Syndrome: Recommendations From a North American Consensus Panel. Pediatric Neurology 68 (2017) 18 - 34 [link]
N. Joshi et al. (2016) An Informatics Infrastructure for KCNQ2 Encephalopathy Research Including a Patient Registry, Database, Curation Platform, and Website. American Epilepsy Society (Abst. 3.329), 2016 [link]
G. Nesbitt et al. (2013) EPGP Informatics Platform. International Journal of Medical Informatics (Vol. 82, Issue 4, Pages 248-259) [link]