Prometheus Research and HealthVerity Announce Selection by Epilepsy Foundation to Develop a Community Data Resource
Epilepsy Foundation, the largest national epilepsy advocacy organization, has selected the team of Prometheus Research and HealthVerity to develop a new data infrastructure capable of creating the largest hub of repurposable data on epilepsy in the world. This new resource will be the foundation for a growing suite of applications intended to improve outcomes for individuals and families affected by epilepsy through tailored, data-driven interactions with patients, clinicians, and researchers.
“We are excited for this opportunity to partner with HealthVerity on this remarkable initiative,” said David Voccola, a co-founder of Prometheus Research. “We are confident that together we will create one of the most impactful disease data resources available anywhere in the world.”
Prometheus’ agile data platform, RexRegistry, will form the informatics backbone of the data hub infrastructure and will enable the multimodal data acquisition, curation, enrichment, and repurposing functions required for such an ambitious undertaking; while HealthVerity’s suite of data services will seamlessly enhance each of Prometheus’ core attributes with comprehensive and accurate patient matching, consent management, and dissemination tools.
“This new relationship is a natural fit for all three partners,” said Andrew Kress, CEO and Co-founder of HealthVerity. “We think this combination of advocacy, infrastructure, and services will become a model for others across the healthcare community.”
“We are excited about this partnership as it allows us to leverage multiple best-of-breed techniques from two leading health informatics organizations to build an innovative epilepsy information database to better serve our community,” said Brandy Fureman, VP of Research and New Therapies, Epilepsy Foundation.
“Our goal is to provide new insights to those with epilepsy and their families, easier ways to track their condition and faster connections to resources and support.” continued Dr. Fureman. “The system will also be able to provide more comprehensive information to a person’s healthcare provider. By creating a valuable insights tool for people with epilepsy and their providers, and with their permission, we can also create a rich data source for researchers and entrepreneurs who are searching for ways to improve outcomes for all people with epilepsy.”
To learn more about Prometheus’ solutions for rare disease advocacy, please visit our solutions page.