We Generate New Revenue Streams for Community Health Systems

  • Revenue generating use of EHR data 
  • Benefits Patients
  • Secure & compliant data management    
  • Quick & Easy Implementation
  • No Cost & No Labor needed, Just Data

A Safe Harbor for Data Mining in Rare Disease

RDDT Partners with Health Care Systems to Mine EHR Data for Rare Disease Patients

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Our intelligent technology mines EHR data

to find and diagnose rare disease patients

within your population. We monetize

EHR data for the benefit of the patient

and the Healthcare System.

RDDT manages an exclusive portfolio of Rare Disease Biotech Companies that sponsor Patient Searches using RDDT Technology

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The biggest problem in rare disease is the

5-8 Year diagnostic odyssey that rare

disease patients suffer through. We created

a compliant way for Biotech to sponsor and

fund the discovery & diagnosis of patients

so we can end the diagnostic odyssey.


RDDT uses proprietary analytics to executes the searches that Identify probable patients with the targeted rare disease

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 We drive the discovery & diagnosis of targeted rare disease patients. We combine clinical and data science in our platform to mine the phenotype rich EHR data to discover rare disease patients 

RDDT delivers to the Healthcare System a list of the "Probable" rare disease patients in need of confirmatory testing

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By helping providers identify patients and biotech identify providers, we create a short list of probable patients, and shorten the diagnostic odyssey of rare disease patients

RDDT Revenue Shares with Health Care System Partner regardless of search outcomes

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Substantive, incremental, recurring revenue for the benefit of the patient. Nothing to purchase, no labor, no promises. Just Data, and in return your providers get insight & knowledge they didn't have and your patients benefit.  


RDDT Delivers to the Biotech Sponsor a list of Providers with "Probable" Patients in need of Follow Up

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The hardest part of the process for Biotech is finding which providers have rare and ultra rare disease patients. Providers don’t have the tools to always know they have rare disease patients 

The RDDT Model

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RDDT partners with Community based vertically integrated Health Care Systems to accelerate the discovery and diagnosis of targeted Rare Disease Patients

No Software Purchase, No Fees, No Cost to Healthcare, Just Incremental, Substantive, Recurring Revenue

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Safe and Secure Use of EHR Data

Our systems for data exchange, data storage and data management are HIPAA and HITECH compliant.

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Data and technology are advancing. Rare disease patient discovery has not, until RDDT

By creating new and incremental revenue streams and aligning incentives, through the safe harbor of RDDT and our management and execution of  targeted searches, we can accelerate their discovery and bring an end to the odyssey 

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RDDT bridges the legal and regulatory divide between Providers and Biotech

Our unique market model empowers collaboration, execution and funding of a process that benefits everyone, particularly patients. 

How Rare Disease is Different

Very Low Volume of Patients

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Rare Disease < 200,000 Patients in the U.S.


Ultra Rare < 10,000 Patients in the U.S.

5-8 Year Diagnostic Odyssey Average

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Because of complexity of diagnosis and heterogeneity of presentation, patients on average suffer a 5-8 year diagnostic odyssey, seeing as many as 8 providers, 4 specialist & suffering frequent mis-diagnosis

Extreme Economies of Scale

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Rare disease is: Low rate of diagnosis & High level of importance to biotech; Low number of therapeutic options & High unmet medical need.  Low volume of patients & High cost of therapy.  Low disease and therapy awareness & High risk patients

Health Care Indifference

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Providers are under-trained in rare diseases, and healthcare systems are not equipped to look for or manage these special patients. Through our network of Biotech companies, we can bring an army of experts and support into play

Very High Value Patients to Biotech

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Because patient populations are so small, manufacturers are able to charge high dollar amounts for therapies, making the discovery of patients very valuable to biotech

Desperate Patients

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80% of rare diseases are genetically linked. These patients have an aggressive disease that is progressively killing them while going un-diagnosed and untreated. We can do better

Empowering Collaboration for the Benefit of the Patient

We Ensure 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

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

RDDT will inform provider leads of all therapeutic options independent of the search's sponsorship

Contact Us

Want to discuss a possible data partnership?

Rare Disease Data Trust

Nashville, Tennessee, United States

Our Partners

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