Genetic Alliance, a nonprofit health advocacy organization committed to enabling individuals to be full participants in clinical research, is joining the Oracle Health Sciences Network to create a bridge linking individuals in its crowd-sourced patient registry to clinical trials.
The Oracle Health Sciences Network will help connect patients who participate in the Registries for ALL system with healthcare providers and research organizations developing and testing new therapies. The goal is to improve collaboration and accelerate cohort identification for clinical trials to rapidly bring better, safer, more targeted therapies to consumers.
Individuals participating in the registry have the flexibility to determine the amount and type of de-identified information they share within the Network. Genetic Alliance’s participation will expand the patient, clinical and genetic information available to organizations leveraging the network.
Genetic Alliance works closely with pharmaceutical and academic research organizations to support and accelerate clinical trials for people with genetic and rare diseases. It will use the Network to facilitate access to these studies for patients from other participating institutions in the network.
Oracle Health Sciences Network enables healthcare providers and research institutions to collaborate with life sciences and healthcare organizations. It provides capabilities for protocol design and patient recruitment and enables participants to work together for system-wide efficiencies in developing new therapies.
“Anyone, anywhere can share their clinical information in our Registries for ALL system and set their sharing preferences to allow it to be part of Oracle Health Sciences Network’s de-identified index—which makes them discoverable for clinical trials across the nation,” said Sharon Terry, president and chief executive officer, Genetic Alliance.