Genetic Alliance Selects Oracle Health Sciences Network to Help Patients Gain Access to Clinical Trials

Genetic Alliance, a non-profit 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 bring better, safer, more targeted therapies to consumers more rapidly.

Individuals participating in the registry have the flexibility to determine the amount and type of de-identified information they share within Oracle Health Sciences Network.

Genetic Alliance’s participation in Oracle Health Sciences Network will help significantly expand the patient, clinical and genetic information available to organizations leveraging the network.
This is the first time grassroots crowd-sourced clinical data is connected to a national clinical data system.

As a leading health advocacy group, Genetic Alliance works closely with pharmaceutical and academic research organizations to support and accelerate clinical trials for people with genetic and rare diseases.

As part of that process, Genetic Alliance will take advantage of Oracle Health Science 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 more efficiently 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.

“Genetic Alliance is excited to join Oracle Health Sciences Network because of the difference it will make for individuals, families and communities living with genetic diseases,” said Sharon Terry, president and chief executive officer, Genetic Alliance. “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. With Oracle Health Sciences Network as part of our registry, we improve the odds that trials will accrue faster.”

“Collaboration and the secondary use of health information are key to advancing personalized medicine. Oracle Health Sciences Network provides a vital and growing resource for the health sciences community, allowing organizations and now individuals to share important de-identified patient, clinical, and genetic information that can accelerate clinical trial recruitment and the delivery of new therapies to market,” said Neil de Crescenzo, senior vice president and general manager, Oracle Health Sciences Global Business Unit. “Oracle is delighted that the Genetic Alliance will be using Oracle Health Sciences Network as a foundation for its national Registries for ALL, further expanding collaboration across the industry.”