This webinar was recorded on April 28th, 2023.

Watch to learn more about the Clinical Research ID (aka The CRID™), a service that enables patients and parents (and their child/children) involved in clinical research studies the opportunity to create their own unique universal patient identifier to be used in clinical research. This CRID identifier can be used across multiple clinical research studies. It will allow researchers to share your clinical data (not PII/PHI) with other research studies you are involved in. The main benefit is that more of your research data can be shared between researchers and data silos can be eliminated.

You’ll hear from the CRID developer, Gerry Nesbitt, 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.

Learn more at: https://thecrid.org/

Para encontrar mais recursos adaptados especialmente para famílias com epilepsia rara/DEE, visite nosso Centro de recursos.