Rare Disease Data Trust
Rare Disease Data Trust is a Nashville-based B2B2B SaaS platform that uses AI and proprietary rare disease search models to identify undiagnosed rare disease patients from community health system EHR data, commercially sponsored by BioPharma manufacturers under a HIPAA, Stark, and AKS-compliant framework.
- Company typePrivate
- Founded2021
- HeadquartersNashville, United States
- Headcount11–50
- GTM typeB2B
- OfferingSoftware
What Rare Disease Data Trust does
Rare Disease Data Trust (RDDT) is a Nashville-area, privately held B2B2B SaaS company that operates a HIPAA, Stark, and Anti-Kickback Statute (AKS)-compliant platform for identifying undiagnosed or 'lost' rare disease patients from healthcare provider electronic health record (EHR) data. The platform ingests both structured and unstructured EHR data into a secure cloud-based rare disease analytics environment and applies proprietary rare disease search data models, artificial intelligence, advanced analytics, and pattern recognition to surface probable rare disease patients to treating providers via a secure portal that includes a clinical dossier covering the disease, approved and emerging therapies, and accepted confirmatory diagnostic protocols. RDDT sells a two-sided commercial model: BioPharma manufacturers sponsor targeted rare disease patient searches and co-develop the search data models, while community-based healthcare systems integrate their EHR data and share in a transaction-fee-based revenue stream from a new rare disease clinical service line; the economics and compliance of these flows are validated by a leading healthcare law firm (compliance white paper) and a leading healthcare Fair Market Valuation firm (FMV analysis), both delivered post-NDA. RDDT was founded around 2020–2021 in Brentwood, Tennessee (incorporated in Delaware), files SEC Form D exempt offerings to raise private capital, and is led by CEO David S. Connor and COO Kerry Hart with a senior team that includes a CTO, a Chief Data Science Officer, a Chief Medical Officer, and a VP of Operations, supported by a board and advisory bench drawn from LifePoint Health, OneOncology, Tennessee Oncology, and Teladoc.
Rare Disease Data Trust firmographics
Firmographics- Name
- Rare Disease Data Trust
- Legal name
- Rare Disease Data Trust, Inc.
- Website
- https://finding-rare.com
- Company type
- Private
- Founded year
- 2021
- Operating status
- Operating
- Headcount range
- 11–50 employees
- Short description
- Rare Disease Data Trust is a Nashville-based B2B2B SaaS platform that uses AI and proprietary rare disease search models to identify undiagnosed rare disease patients from community health system EHR data, commercially sponsored by BioPharma manufacturers under a HIPAA, Stark, and AKS-compliant framework.
- Ownership category
- akta.pro rank
Rare Disease Data Trust industry classification
Industry- Product category
- Healthcare Analytics Software
- NAICS
- Software Publishers (5132), Security Systems Services (except Locksmiths) (561621)
- SIC
- Services-Misc Health & Allied Services, Nec (8090), Services-Computer Programming, Data Processing, Etc. (7370)
- akta.pro primary industry
- De-identification, Tokenization & Privacy-Preserving Data Platforms (HLACAIAK)
- akta.pro secondary industries
- Patient-Mediated Exchange & Personal Health Data Access (Blue Button, SMART on FHIR) (HLACABAN), Data Loss Prevention (DLP) & Sensitive Data Discovery (PHI/PII) (HLACAJAC)
Keywords
Where Rare Disease Data Trust is headquartered
LocationHeadquarters
- HQ city
- Nashville
- HQ country
- United States
- HQ region
- North America
Offices2 records
Markets served
Rare Disease Data Trust business model
Business model- GTM type
- B2B
- Offering type
- Software
- Cost components
- Personnel, Technology or R&D, Marketing or Sales, Operations, Others
Revenue model
- BioPharma Search Sponsorships: BioPharma companies sponsor targeted rare disease searches through RDDT and have input into the search data models; sponsors receive immediate and confirmed alerts to providers with newly diagnosed rare disease patients. Structured as commercially sponsored engagements — recurring/programmatic.
- Healthcare Provider Data Partnership Revenue Share: RDDT creates a compliant revenue stream for healthcare provider partners based on the value of data sharing, identification of undiagnosed patients, diagnostic acceleration, and facilitation of evidence-based care. Validated by a Fair Market Valuation (FMV) firm in the healthcare sector.
- Strategic Compliance & FMV Advisory Deliverables: Delivery of BioPharma and Healthcare Provider White Papers validating model compliance (authored by leading law firms in the rare disease / healthcare sectors) and Fair Market Valuation analyses (authored by a leading FMV firm), distributed post-NDA.
Pricing tiers
| Model | Billing | Price |
|---|---|---|
| Other | Multi-year contract | Quote-based BioPharma Search Sponsorships and Provider Data Partnerships |
Go-to-market motion2 records
Distribution channels3 records
Marketing channels6 records
Rare Disease Data Trust product offering
Product offeringCore offering
Rare Disease Data Trust operates a secure cloud-based AI SaaS platform that integrates healthcare provider electronic health record (EHR) data with proprietary rare disease search data models to identify probable undiagnosed rare disease patients. The platform acts as a HIPAA, Stark, and Anti-Kickback Statute (AKS)-compliant neutral mediator that connects BioPharma manufacturers sponsoring targeted rare disease searches with community-based healthcare providers, generating immediate alerts and clinical dossiers for newly diagnosed eligible patients.
Product overview
Rare Disease Data Trust (RDDT) operates a single unified platform — the Rare Disease Data Trust Platform — that links BioPharma sponsors and community-based Healthcare Providers through two coordinated service lines: Sponsored Searches for Targeted Rare Disease Patients (the BioPharma offering) and the Healthcare Provider Data Partnership (the provider offering). The platform ingests provider EHR data, runs proprietary rare disease search models, and produces Clinical Dossiers that surface probable rare disease patients to providers while alerting sponsors to eligible providers. Supporting compliance and economics assets — the BioPharma White Paper and the Fair Market Valuation Analysis — sit alongside the core platform, and a Rare Disease Patient Education Resources layer rounds out the offering for patients and caregivers.
Differentiator
Problem solved
Functional benefit
Products and services
- Rare Disease Data Trust Platform Core HIPAA, Stark, and AKS-compliant platform that integrates healthcare provider EHR data (structured and unstructured) into a secure cloud-based rare disease analytics environment and applies proprietary search models to identify probable rare disease patients, delivering alerts and clinical dossiers to providers and sponsors.
- Sponsored Searches for Targeted Rare Disease Patients BioPharma-facing service offering that enables manufacturers to commercially sponsor targeted EHR searches by rare disease. Sponsors co-develop search data models, receive analytical model review and compliance documentation, and get immediate alerts to providers with newly diagnosed eligible patients.
- Healthcare Provider Data Partnership Provider-facing service offering in which community-based health systems integrate their EHR data with the platform, receive notifications about probable rare disease patients through a secure portal with clinical dossiers, and earn a new compliant revenue stream from a rare disease clinical service line.
Quantifiable outcome
- 75% of rare disease patients reside in community-based healthcare systems that RDDT data-partners with
- +3 more outcomes
Companies that use Rare Disease Data Trust
Customer profileSegments3 records
Ideal customer profiles2 records
Rare Disease Data Trust technology and API
TechnologyTechnology focussed Yes
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Integration1 record
AI capability7 records
Feature5 records
Rare Disease Data Trust partnerships and signals
Strategic signalScale indicators8 records
Recent moves6 records
Expansion highlights5 records
Rare Disease Data Trust competitors and assessment
Company assessmentDirect peers
- TriNetX: Global real-world data and analytics network connecting healthcare organizations with biopharma for clinical research and patient identification, including rare-disease cohorts. Comparable to RDDT because both monetize EHR-derived patient-finding for biopharma sponsors, though TriNetX is much larger and oriented around clinical trials rather than diagnostic-odyssey rescue.
- Deep 6 AI: AI platform that mines structured and unstructured EHR data to identify eligible patients for clinical trials and specialty therapies. Comparable to RDDT in the AI-on-EHR patient-finding workflow, though Deep 6 focuses on trial accrual rather than compliant BioPharma-sponsored diagnostic searches.
- Mendel: AI platform that structures clinical data and matches patients to trials and therapies at scale, serving both biopharma and providers. Comparable to RDDT in the EHR-derived rare-disease and specialty patient identification use case, with similar structured/unstructured NLP architecture.
- Datavant: Healthcare data connectivity platform that links de-identified patient records across providers, payers and life sciences for real-world evidence and research. Comparable to RDDT because both operate as neutral, compliance-oriented intermediaries between data holders and biopharma, though Datavant focuses on record linkage rather than diagnostic alert generation.
- ConcertAI: Real-world evidence and AI platform focused on oncology and specialty disease patient identification and outcomes research for biopharma. Comparable to RDDT in the AI-driven EHR analytics for rare-disease/specialty patient-finding workflow and in serving biopharma sponsors with cohort insights.
Broad incumbents
- Flatiron Health: Oncology-focused real-world data platform (acquired by Roche) that aggregates EHR data for research and biopharma decision support. Comparable to RDDT in EHR-based specialty patient analytics for biopharma, but Flatiron is far larger, oncology-only, and vertically integrated with a major biopharma sponsor.
- IQVIA: Global clinical and commercial life-sciences services and real-world evidence giant with extensive biopharma data assets and patient-finding capabilities. Comparable to RDDT in selling patient identification and real-world evidence to biopharma, though IQVIA is far broader, more established, and better capitalized.
- Veradigm: Healthcare data and EHR analytics business (formerly Allscripts) that aggregates ambulatory EHR data for life sciences and provider analytics. Comparable to RDDT in EHR-based patient cohort identification for biopharma, but Veradigm owns the underlying ambulatory EHR footprint rather than partnering with it.
Emerging players
- Tempus: Precision medicine platform combining genomic and clinical data with AI to support therapy selection and biopharma research. Comparable to RDDT in using multimodal clinical/structured data plus AI to surface rare-disease and specialty patients to providers and biopharma, though Tempus is genomics-led and substantially larger.
- Foundation Medicine: Genomic profiling company (Roche subsidiary) specializing in comprehensive genomic testing including for rare and ultra-rare cancers and inherited disease. Comparable to RDDT in the rare-disease patient identification mission, though Foundation Medicine is anchored in molecular diagnostics rather than EHR analytics and is far better capitalized as a Roche subsidiary.
Market position
Strengths5 records
Weaknesses5 records
Competitive moat5 records
Key risks7 records
Key highlights6 records
Customer concentration
Rare Disease Data Trust social profiles
Digital presenceRare Disease Data Trust compliance and trust
Trust signalCompliance4 records
Rare Disease Data Trust financial estimates
Financial estimateRevenue estimate
Valuation estimate
Rare Disease Data Trust leadership team
Management profileNumber of profiles
Profiles11 records
Rare Disease Data Trust funding detail
Funding detailFunding overview
Funding rounds5 records
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
Rare Disease Data Trust M&A and investment
M&A and investmentM&A
Investments
M&A and investment is available on the Subscription and Enterprise plan.Contact sales →
Frequently asked questions about Rare Disease Data Trust
What does Rare Disease Data Trust do?
Rare Disease Data Trust operates a secure cloud-based AI SaaS platform that integrates healthcare provider electronic health record (EHR) data with proprietary rare disease search data models to identify probable undiagnosed rare disease patients. The platform acts as a HIPAA, Stark, and Anti-Kickback Statute (AKS)-compliant neutral mediator that connects BioPharma manufacturers sponsoring targeted rare disease searches with community-based healthcare providers, generating immediate alerts and clinical dossiers for newly diagnosed eligible patients.
Is Rare Disease Data Trust a public or private company?
Rare Disease Data Trust is a private company. It is classified as founder individual operated bootstrapped and is currently operating.
When was Rare Disease Data Trust founded?
Rare Disease Data Trust was founded in 2021. It employs 11 to 50 people.
Where is Rare Disease Data Trust based?
Rare Disease Data Trust is headquartered in Nashville, United States, in the North America region.
How does Rare Disease Data Trust make money?
Three revenue lines are on record. BioPharma Search Sponsorships are the primary driver. The others are healthcare Provider Data Partnership Revenue Share and strategic Compliance & FMV Advisory Deliverables.
Who are Rare Disease Data Trust's main competitors?
Direct peers on record are TriNetX, Deep 6 AI, Mendel, Datavant and ConcertAI. Broad incumbents are Flatiron Health, IQVIA and Veradigm. Emerging players are Tempus and Foundation Medicine.
Does Rare Disease Data Trust have an API?
No public API is recorded for Rare Disease Data Trust.
What industry is Rare Disease Data Trust in?
Rare Disease Data Trust's product category is Healthcare Analytics Software. Its primary akta.pro industry code is HLACAIAK, De-identification, Tokenization & Privacy-Preserving Data Platforms, with a secondary code of HLACABAN, Patient-Mediated Exchange & Personal Health Data Access (Blue Button, SMART on FHIR). Its NAICS code is 5132 and its SIC code is 8090.