Close the gap
for undiagnosed
rare disease
patients
Generate a new high value service line and ongoing revenue stream
Leverage your existing data assets to benefit your business and community
THE DIAGNOSTIC ODYSSEY
Why Target Rare
Disease Patients?
Rare disease patients typically wait 5-8 years to get an accurate diagnosis. This search for answers is known as diagnostic odyssey. During a diagnostic odyssey, rare disease patients will see up to 10 different providers, half of which are specialists, be misdiagnosed three times and inappropriately care for at least twice, while frequently being tagged as psychosomatic or drug seekers. Patients also face irreparable harm to their bodies as well as running the risk of their therapeutic window closing.
HOW IT WORKS
Unmatched Experience
Our team's combined 40+ years in the rare disease marketplace and personal experience with the rare disease diagnostic odyssey led us to believe that there had to be a better way. We knew the data to accelerate rare disease diagnoses and target patients existed in the electronic health records. We just had to figure out how to access it while protecting patient privacy and maintaining legal compliance. Rare Disease Data Trust is the solution.
Data Integration
Our team integrates your electronic health record data with our secure cloud-based rare disease analytics platform where structured and unstructured data is prepared for rare disease patient searches.
Patient Search
We apply our proprietary rare disease search data models to identify probable rare disease patients. You are notified about these patients via secure portal. We provide a clinical dossier to inform treating physicians about the rare disease, all approved and emerging therapies, and the accepted confirmatory diagnostic protocol.
Diagnostic Triage
Now, you do what you do best. Using the clinical information we provided in the dossier, you decide who is best suited to reach out to the probable patient, schedule diagnostic testing, conduct the testing and communicate results to the patient. The dossier informs the physician about resources available to assist in care planning. The provider and patient can then independently decide on the best path forward.
Generate Revenue
In establishing a rare disease service line, sharing data for patient searches, accelerating accurate diagnosis, and facilitating evidence-based care for these patients, you create significant value. Rare Disease Data Trust recognizes this value in the compliant revenue stream we create for provider partners.
