of EHR data from healthcare providers
Compliant commercial sponsorship to drive discovery of lost patients
Accelerated discovery and diagnosis of rare disease patient population
Easily find qualified providers with newly diagnosed rare disease patients
WE UNDERSTAND
Finding Your Market
in Rare Disease is
Complex and Expensive
Privacy and compliance regulations designed to protect patients make it difficult to find those who could benefit from your solution while increasing the diagnostic odyssey for those same rare disease patients.
Small patient populations in the rare and ultra-rare disease marketplace simply don't have the critical mass for standard marketing techniques to work. This leaves you scrambling for alerts and investing critical time and money in efforts that often turn out to be dead ends.
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.
We serve as a neutral mediator that allows companies like yours to sponsor the creation of targeted searches by rare disease. When a targeted patient is found, the provider will receive an alert about that patient and you will receive an alert to that provider. So, by the time you connect with them, the provider may know if a patient could benefit from your solution.
Analytical Model Review
and Compliance Check
Our team will provide you all information and documentation your legal and medical compliance officers need to understand how our model works.
Develop Search
Criteria and Data Set
We add your disease state insights to a custom data model to target the patients most likely to benefit from your solution.
Test Sample Data
and Refine Data Model
We will test the data model on a known set of sample data and refine it until it consistently generates the best alerts for your solution.
Get Immediate and
Confirmed Alerts
Get alerts to providers with newly diagnosed rare disease patients who could benefit from your solution. It's a win for you, the provider, and the patient.