Rare Disease Data Trust

This is the problem we solve

This is how we solve the problem

All rare disease patients. Our first priority are to disrupt the diagnostic odyssey of rare disease patients for which there are viable solutions and treatments. Our second priority are rare disease patients for whom there are viable clinical trials. Our target data partners are community healthcare only, not academic, as we want to go up stream to where 70% of the patient population reside, where the diagnostic odyssey begins and where knowledge and awareness of providers on rare disease is at the lowest. Rare disease patients are just outside the scope and knowledge of most community based providers and they lack the tools, time, know how and incentive to proactively discover these patients, thus the typical 5-7 year diagnostic odyssey. 

I personally spent 30+ years in bio-tech and 22 of those years in rare disease sector, commercializing 8 ultra rare disease therapies. I personally saw overwhelmed providers without the tools and time to solve the problem yet frequently finding undiagnosed patients that were right under their nose, progressing painfully and often irreversibly. Those providers found them only because I was in their office training and pushing them to do so, this solution labor intensive solution does not scale well, and leave most patients undiscovered. Access, time, motivation, low volume and low ROI, all stand as barriers to any kind of systematic search and rescue of these patients. I knew there had to be a better way to serve patients and disrupt the diagnostic odyssey. The US for profit healthcare systems is built for volume and value, and rare disease patients don't fall into either one of those economic buckets. I personally have had patients cry on my shoulder, once diagnosed, because they were so thankful that somebody was looking for them proactively, we can do that on scale with speed now in collaboration with providers, groups and health systems. Patients need help, Providers need help, and we discovered a compliant way to a establish a new and substantive revenue stream to drive the realization of this much needed solution. Patients are the primary beneficiary of our model. Fast, accurate and informed diagnosis, isn't that what we should want and expect?

The money would be fine, but what we really want is notoriety of our solution. Bio-pharma has been doing the same thing for 20 years (I know) and our solution will be revolutionary for them and patients. No technical issues we have a robust suite of technology, mature AI, data ingestion engines and it is all proprietary to us. Legal no issue, we have legal white papers by leading firms that validate the compliance of our model, and we have a FMV that established the financial metrics of the marketplace. Cultural none, other than healthcare doesn't know or understand rare disease, but our model and revenue is changing that. Market barriers are the status quo, new and time. Our model is the future, how fast it arrives is the question.  

Our solution doesn't exist outside of our model. Nobody EVER thought there would be a compliant way for bio-pharma manufacturers to sponsor targeted searches of provider data for lost undiagnosed rare disease patients, on scale and with speed. We found that pathway to create a solution that is and will be adopted by healthcare, through a controlled data commercialization strategy serving these desperate and underserved patient populations. We discovered the model and workflow to solve the biggest problem in the sector, it will change everything for the better and will accelerate not only patients to diagnosis and care, but accelerate the whole sector, through R&D. There is an underbelly of "for-profit" healthcare, and that is in our fee for service model, volume = value, rare disease patients are just at the bottom of healthcare to do list, and NOBODY in healthcare are looking proactively for this small and desperate patient population, until now. We can change this status quo, by elevating the most vulnerable patient in healthcare to the priority they should be in healthcare with a compliant and substantive revenue stream that will do so. 

1. Execute on our current data relationships and search sponsors and interrupt the diagnostic odyssey of their targeted lost rare disease patients

2. Publish our findings on new bio-marker discoveries and AI model hit rates

3. Create a critical mass seed change where health systems and provider groups employing our model are the rule instead of the exception

4.  Successfully establish a service line in community healthcare that becomes the standard of care because it elevates rare disease patients to the priority in healthcare they should be

5. End the rare disease diagnostic odyssey, 7000+ to go

Because we deal with connected (provider owned data) we can drive triage, and see outcomes on suspect isolates, we will know our impact, by measuring the # of positively diagnosed patients, from our suspect patients presented back to healthcare, our outcomes are definitive. See our Proof of Concept to learn more (attached)

The single problem that has not changed in the marketplace in 30 years is the rare disease diagnostic odyssey. Before now the technology and model did not exist to accomplish this on scale. Until we can integrate new born screening across all rare diseases, we cannot disrupt this 

In 2020, Rare Disease Data Trust (RDDT) entered the rare disease market with a mission to shorten the diagnostic odyssey to as few as months so that patients could be successfully identified then handed off to providers who had treatments that would provide a cure. Seeking to utilize the absolute latest in technology for ingesting, indexing, and analyzing data, the solution that resulted meant that an array of linked elements needed to work in holistic union. These elements are:

• Optical Character Recognition (OCR)
• Intelligent Character Recognition (ICR)
• Natural Language Processing (NLP)
• Natural Language Understanding (NLU)
• Machine Learning (ML)
• Artificial Intelligence (AI)

We believe that this is the first time ever that a combination of these solutions has been used to such effect in the health sector. We removed barriers to entry and alleviated the burden on IT departments by ingesting data through our proprietary ingestion engine where we can utilize all data types from multiple data sources, without any complication. This technology advancement allows RDDT to assimilate structured and unstructured data from the entire continuum of care to include EHR, laboratory, Rx, imagining, and diagnostic activity logs then utilize pattern development and AI to identify biomarker and disease profiles resulting in deep learning models. These models are then utilized to identify suspect isolate patients in large healthcare databases over and over. The more data passed through the model the more it matures while finding suspects much sooner in the diagnosis. These patients are deidentified to the healthcare provider who is educated on treatment profiles available to the patient by RDDT dossiers. The patient is then matched with the treatment available

We are in this to help patients, so caring for people is our true north. This true north translates over to people, and particularly applies to our team. Patients first, Customers Second, Us Third.  You can't say you are for patients and then turn around and disrespect your own people. That is like a father saying he loves his wife, but then abusing his children, the inconsistencies cannot be reconciled. We treat everyone with respect and honor, and let the work speak for the person, which is about serving patients. 

This is our business model

This is the source of our revenue