GeneDx and Prognos Health have formed a strategic partnership to shorten the treatment journey for patients with rare diseases by utilising real-world data.

GeneDx, renowned for its expertise in delivering improved health outcomes through genomic and clinical insights, is collaborating with Prognos Health, a real-world integrated data marketplace. The primary goal of this partnership is to provide patients with rare diseases with faster access to life-saving therapies by leveraging real-world data.

As part of the collaboration, life science companies will have access to a comprehensive de-identified dataset that specifically focuses on rare diseases. This dataset is intended to expedite the process of accessing life-saving therapies for patients with rare conditions.

The Prognos Marketplace will integrate GeneDx’s de-identified rare disease data, which will include regular updates as GeneDx continues to add new genomic and health information retrieved through its advanced whole genome and whole exome sequencing tests.

By integrating this valuable data into the Prognos Marketplace, biopharma companies working with Prognos will receive automatic alerts regarding newly diagnosed patients with rare diseases who may benefit from therapies already approved by the US Food and Drug Administration (FDA).

Through this partnership, GeneDx and Prognos Health aim to enhance the healthcare journey for patients with rare diseases by leveraging real-world data to accelerate access to life-saving treatments. The integration of GeneDx’s specialized rare disease data with Prognos Health’s data marketplace is expected to have a significant impact on patient care and the availability of life-saving therapies.

GeneDx chief transformation officer Kareem Saad said: “Patients with rare diseases oftentimes have to endure a diagnostic odyssey of approximately eight years, meaning that not months, but years are wasted without an accurate diagnosis and knowledge of or access to an FDA-approved therapy.

Through this partnership, GeneDx and Prognos Health aim to enhance the healthcare journey for patients with rare diseases by leveraging real-world data to accelerate access to life-saving treatments. The integration of GeneDx’s specialized rare disease data with Prognos Health’s data marketplace is expected to have a significant impact on patient care and the availability of life-saving therapies.

GeneDx chief transformation officer Kareem Saad said: “Patients with rare diseases oftentimes have to endure a diagnostic odyssey of approximately eight years, meaning that not months, but years are wasted without an accurate diagnosis and without knowledge of or access to an FDA-approved therapy.

“GeneDx is dedicated to ending the diagnostic odyssey for patients and their families, and this partnership gives us the opportunity to go a step further to connect clinicians and their patients with rare diseases to appropriate treatment options and ultimately improve health and health economic outcomes.”

GeneDx possesses a comprehensive genetic database that is particularly enriched for rare diseases, comprising samples from over 1.3 million patients. Within this database, there are more than 450,000 exomes and genomes, providing valuable genetic information for research and diagnostics.

On the other hand, Prognos Health’s Marketplace is a vast and diverse data repository that contains information on over 325 million de-identified patients. This includes lab and health records, as well as claims data, pharmacy prescription data, and various other types of data.

Prognos Health CEO Sundeep Bhan said: “Prognos Health’s mission has always been to unlock the power of data to improve health, and this partnership further enables us to provide actionable insights in rare diseases that can help clinicians make more informed decisions and ensure patients receive the right treatment at the right time.

“With the rare disease genomics data and expertise available to us through partners like GeneDx, our life science clients can leverage the Prognos Marketplace to bring about a paradigm shift in the treatment of rare diseases.”