RDDT is Different

We are Rare Disease People

If you haven't done rare disease, sorry but then you don't know rare disease. We KNOW Rare Disease, we have done what you are doing and we know how hard it is, and we know how limited the solutions are in finding rare disease patients. It was out of that frustration that this solution was born. 

We Target Vertically Integrated Community Based Health Systems

We target COMMUNITY based health care systems. It is in the community systems where as much as 80% of patients reside, and it is where the diagnostic odyssey is most pronounced. Our focus is to partner with these providers to raise the bar in rare disease diagnosis & care

Only Live Electronic Health Record data, NOT weak & inconclusive Claims data

We are analyzing real & active Electronic Health Record data, driving the discovery & diagnosis of real patients. We use machine learning and AI to find high probable patients in need of a further evaluation and diagnostic confirmation.   

Leads to Providers with Real Patients

We aren't guessing where patients might be, we help providers find real live rare disease patients lost in the system in a diagnostic odyssey. Patients with probable disease, and we help you find those providers, so you can serve the patient

Patient Pull Through to Diagnosis Partnerships

Because of our partnership and revenue sharing with healthcare Providers & Systems, we can drive the pull through of "probable" patients to a conclusive diagnosis. This creates a sense of urgency and motivation necessary to change the status quo

Problems We Help Solve

Rare Disease Patients are Lost


 The US healthcare system is a volume based business built for the masses and Rare Disease Patients.  are outside the bandwidth of most providers, which explains the 5-8 year diagnostic odyssey of most rare disease patients. No one in health care is proactively looking for these special patients and you can't find what you aren't looking for

Overwhelmed Providers


 Overwhelmed and Under Supported Providers with Rare Disease Patients they are not equipped to consistently manage or find a one in a million patient. There are now 5300 medical journals producing 800,000 articles a year, no one can keep up with that

Rare Disease Patients have no ROI for Healthcare


This was true before RDDT, but we are changing the marketplace. Like it or not we have a capitalistic health care system and they prioritize strategies around revenue. By making the discovery and diagnosis of these patients valuable, we can  transform the Rare Disease marketplace 

Rare Disease Patients are Complex, High Maintenance & Time Consuming


Why would anyone look for a subset of patients they don't believe they have and they really don't want to find? Particularly when they have no ROI potential.

The Majority of un-diagnosed Rare Disease Patients are in the Community setting


80% of patient volume now resides within the consolidated, community based, vertically integrated health care systems, and we can offer a portal to mine their data to drive the diagnosis of targeted rare diseases

The Biotech Industry's is locked out and limited in its ability to collaborate with Health Care


It is getting more and more difficult for industry to get quality time with important providers and patients are paying the price, and this problem is compounded, when it comes to complex and nuanced rare disease patients

RDDT Changes Everything


Rare Disease Biotech need more efficient and effective methods of Finding Rare Disease Patients

Because of superior EHR data and rare disease expertise, we can efficiently and rapidly discover likely rare disease patients, drive them to diagnosis and tell you which providers have them


By Aligning incentives, RDDT has transformed the marketplace through collaboration

RDDT is a middle man that empowers healthcare and biotech to compliantly work for the benefit of the patient. With Biotech funding the analytics, RDDT executing the analysis and Healthcare providing the data and being rewarded through revenue share from RDDT, powerful new tools can be deployed to accelerate the discovery of these hard to find patients. 


The Patient is the Primary Beneficiary of the Collaboration

Industry Funds the data searches for rare disease patients that are lost in a healthcare system, and in doing so accelerates the discovery, identification and diagnosis of those patients


The Name of the Game is Driving Diagnosis

By creating a compliant platform for biotech & healthcare to collaborate and coordinate the acceleration of diagnosis, we can transform the marketplace in a way that is good for everyone


Making Rare Disease Easier

We make short list of patients for providers and short list of providers for Biotech. It may not be exactly "easy", but it is light years better than  the status quo

We do More than Just give you Provider Leads

RDDT uses provider owned EHR data, NOT claims data

Personal Services Safe Harbor = Compliance

RDDT drives ONLY the discovery and diagnosis of Rare Disease patients, NOT utilization

Payment for sponsored searches is done up front and in good faith with no promised outcomes and with

All Biotech/Industry will ever receive is HIGH value provider leads wtih "probable" patients

Therapeutic decisions are 100% up to provider & patient with no influence from RDDT

Industry/Biotech will never see or interact with any patient data and will never see any PHI

Industry/Biotech remains anonymous to Health System & Providers

Contact Us

Want to discuss a possible sponsorship of a targeted rare disease search with our health system partners?

Rare Disease Data Trust

Nashville, Tennessee, United States

Our Customers