Autoimmune Registry
Autoimmune Registry is a US 501(c)(3) nonprofit operating a patient-driven registry of 5,000+ registrants across 100+ autoimmune diseases, providing epidemiological data to researchers and connecting patients to clinical trials via a 20+ partner advocacy network.
- Company typePrivate
- Founded2016
- HeadquartersGuilford, United States
- Headcount1–10
- GTM typeB2C
- OfferingServices
What Autoimmune Registry does
Autoimmune Registry Inc. (ARI) is a US-based 501(c)(3) nonprofit founded in 2016 and headquartered under New York jurisdiction, operating the first comprehensive cross-disease patient registry modeled on the National Cancer Registry. The platform aggregates patient-reported diagnostic, treatment, family history, and financial impact survey data from 5,000+ registrants across 100+ autoimmune diseases, and enriches disease profiles with electronic health record and patient survey data from the NIH All of Us Research Program. ARI monetizes exclusively through voluntary donations and legacy gifts; patient registration and data access are free, with revenue derived from individual donors and a network of 20+ patient advocacy partner organizations. A dual-layer data architecture separates personally identifiable data from non-identifiable data, with 30-year retention, annual security assessments, and oversight by a Community Advocacy Committee. The organization serves four primary personas: autoimmune disease patients (registrants), medical researchers and academic institutions (data users), physicians and healthcare providers (referral channel), and patient advocacy organizations (network partners). Notable research collaborations include a February 2025 Journal of Clinical Investigation publication with Mayo Clinic establishing that approximately 15 million Americans (5%) have an autoimmune disease, citation in the 2022 National Academy of Sciences report on enhancing NIH autoimmune disease research, and ongoing work with Yale School of Medicine and University of Virginia School of Medicine on T-lymphocyte and scleroderma research, respectively. Mette Dyhrberg was appointed CEO in February 2026 alongside the organization's 10-year anniversary.
Autoimmune Registry firmographics
Firmographics- Name
- Autoimmune Registry
- Legal name
- Autoimmune Registry Inc.
- Website
- https://autoimmuneregistry.org
- Company type
- Private
- Founded year
- 2016
- Operating status
- Operating
- Headcount range
- 1–10 employees
- Short description
- Autoimmune Registry is a US 501(c)(3) nonprofit operating a patient-driven registry of 5,000+ registrants across 100+ autoimmune diseases, providing epidemiological data to researchers and connecting patients to clinical trials via a 20+ partner advocacy network.
- Ownership category
- akta.pro rank
Autoimmune Registry industry classification
Industry- Product category
- Patient Registry
- akta.pro primary industry
- Patient Registries & Chronic Disease Registry Analytics (HLACAHAH)
- akta.pro secondary industry
- Disease Registries (Cancer, Immunization, Rare Disease, etc.) (HLAJAJAE)
Keywords
Where Autoimmune Registry is headquartered
LocationHeadquarters
- HQ city
- Guilford
- HQ country
- United States
- HQ region
- North America
Markets served
Autoimmune Registry business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Personnel, Technology or R&D, Operations, Marketing or Sales, Others
Revenue model
- Donations: The organization operates as a 501(c)(3) nonprofit charity supported entirely by voluntary donations from individuals, donors, and legacy donations. No commercial products or services are sold.
Pricing tiers
| Model | Billing | Price |
|---|---|---|
| Freemium | Annual | Free patient registration |
Go-to-market motion1 record
Distribution channels3 records
Marketing channels5 records
Autoimmune Registry product offering
Product offeringCore offering
Autoimmune Registry operates a free, online patient registry that tracks more than 100 autoimmune diseases and collects diagnostic, treatment, and outcome data directly from patients. Modeled on the National Cancer Registry, the platform lets individuals document their autoimmune disease journey and makes de-identified data available to researchers, clinicians, and partner institutions studying autoimmune disease epidemiology, treatment patterns, and clinical trial recruitment.
Product overview
The Autoimmune Registry is a patient-driven data platform comprising a patient registry, an autoimmune disease database with profiles for over 100 diseases, and multiple survey modules. The core registry platform aggregates patient-reported data from its own registry and NIH's All of Us database to collect epidemiological data on autoimmune diseases. The disease list provides comprehensive disease profiles with prevalence figures. The survey suite includes diagnostic surveys, treatment and care surveys, family history surveys, and financial impact surveys that collect longitudinal data on disease outcomes. Disease-specific insights are then generated from the aggregated survey data to identify patterns in diagnosis and treatment.
Differentiator
Problem solved
Functional benefit
Products and services
- Autoimmune Registry Patient Registry Free, online patient registry that allows individuals with autoimmune diseases to record and share their diagnostic, treatment, and outcome data over time. Aimed at autoimmune disease patients who wish to contribute their health journey to a centralized dataset that supports research.
- Researcher Data Access Program De-identified data access and collaboration program for medical and academic researchers studying autoimmune diseases, supporting epidemiology studies, outcome analyses, and clinical trial recruitment. Delivered through research partnerships with institutions including Mayo Clinic and the NIH All of Us Research Program.
Quantifiable outcome
- Published first paper on prevalence of over 100 autoimmune diseases in Journal of Clinical Investigation with Mayo Clinic, estimating 5% of US population (15 million) has autoimmune disease, with women twice as likely as men
- +1 more outcomes
Companies that use Autoimmune Registry
Customer profileNamed customers3 records
Segments4 records
Ideal customer profiles3 records
Autoimmune Registry technology and API
TechnologyTechnology focussed Yes
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Feature4 records
Autoimmune Registry partnerships and signals
Strategic signalPartnerships
Six partnerships are on record, tiered core, minor and flagship.
- Patient Health Alliance (PHA)coreMonthly Patient Advocacy Group webinar collaboration with PHA, featuring guest speakers like Cori Woolf, Director of Patient Advocacy at PHA, to discuss building meaningful and sustainable advocacy programs supporting mental health and emotional wellbeing.
- University of Virginia School of MedicineminorCollaboration with UVA researchers on scleroderma research, where scientists identified macrophages as cells driving systemic scleroderma scarring. Research showed targeting macrophages could potentially halt disease progression.
- Mayo ClinicflagshipCollaboration to publish the first study on prevalence of over 100 autoimmune diseases in the Journal of Clinical Investigation (February 2025). The study estimated that roughly 5% of the US population (15 million people) is diagnosed with an autoimmune disease, with women twice as likely as men. This was the first study of this scale in autoimmune disease epidemiology.
- NIH All of Us Research ProgramcoreRegistry incorporates data from the NIH's All of Us platform into online disease profiles for over 100 autoimmune diseases. Data includes electronic health records and patient-reported survey responses. The All of Us Research Program is supported by the National Institutes of Health with multiple Regional Medical Centers, Data and Research Center, Biobank, and Community Partners.
- National Academy of SciencescoreThe Autoimmune Registry was cited numerous times in the 2022 National Academy of Sciences report on Enhancing NIH Research on Autoimmune Diseases. The report identified gaps in epidemiological data and cited the registry's list and classification of autoimmune diseases by level of evidence as a resource addressing those gaps.
- Autoimmune Registry Network (20+ patient advocacy groups)coreNetwork connecting over 20 patient advocacy groups that collaborate on research, awareness campaigns, and patient support initiatives. Network members participate in monthly webinars and can apply for patient stipends for research participation.
Scale indicators5 records
Recent moves6 records
Expansion highlights4 records
Autoimmune Registry competitors and assessment
Company assessmentOthers
- Patient-Centered Outcomes Research Institute (PCORI): PCORI funds patient-centered comparative clinical effectiveness research and maintains patient-driven data networks. It is thematically adjacent to ARI's mission of empowering patients to drive autoimmune research outcomes, though it operates as a government-funded research funder rather than a registry operator.
Direct peers
- American Autoimmune Related Diseases Association (AARDA): AARDA is a US nonprofit advocacy organization dedicated to the full spectrum of autoimmune diseases, closely paralleling ARI's cross-disease autoimmune mission. Both organizations operate as national hubs for autoimmune patient advocacy, awareness, and research collaboration, making them the most directly comparable peer in mission and structure.
- Scleroderma Foundation: The Scleroderma Foundation is a dedicated patient advocacy and research organization for a single autoimmune disease, comparable to ARI's per-disease patient and research relationships. ARI even lists scleroderma among its tracked diseases and has partnered with UVA on scleroderma research.
- National Organization for Rare Disorders (NORD): NORD operates patient registries across hundreds of rare diseases and serves as a research participation hub — highly analogous to ARI's cross-disease autoimmune registry model. Both organizations converge on rare/underrepresented disease patients, maintain patient-reported data, and partner with researchers for clinical trial enrollment.
- National Alzheimer's Coordinating Center (NACC): NACC maintains a longitudinal patient data repository for Alzheimer's disease across US research centers, mirroring ARI's model of aggregating cross-institutional patient data for epidemiological research. It serves as a structural analogue for ARI's goal of becoming a centralized research resource for autoimmune diseases.
- Lupus Foundation of America: The Lupus Foundation of America operates patient support programs, research funding, and aggregated lupus patient data — a focused analogue to ARI's per-disease community and research work. Like ARI, it serves as a bridge between autoimmune patients, advocacy groups, and pharmaceutical researchers, though focused on a single condition.
- Arthritis Foundation: The Arthritis Foundation is a large US patient advocacy organization focused on autoimmune and inflammatory arthritis conditions, with research funding and patient data partnerships. It mirrors ARI's model of pairing patient advocacy with research enablement in the autoimmune disease space, but at greater scale and narrower disease scope.
- Crohn's & Colitis Foundation (IBD Plexus): The Crohn's & Colitis Foundation operates IBD Plexus, a comprehensive patient registry for inflammatory bowel disease, collecting biosamples, clinical data, and patient-reported outcomes. It is a direct analogue of ARI's registry approach but for a single autoimmune disease cluster.
- Cystic Fibrosis Foundation Patient Registry: The Cystic Fibrosis Foundation runs the gold-standard US patient registry for a single chronic disease, which has long been cited as a model for disease-specific data aggregation. It is conceptually comparable to ARI in operationalizing disease registries, but at much greater scale and depth in a single disease.
Broad incumbents
- IQVIA: IQVIA operates large-scale commercial patient registries and real-world data platforms for pharma and academic sponsors across many therapeutic areas. It represents the institutional, commercial incumbent version of ARI's registry ambitions, with vastly greater scale and pharma relationships.
Market position
Strengths5 records
Weaknesses5 records
Competitive moat4 records
Key risks6 records
Key highlights6 records
Customer concentration
Autoimmune Registry social profiles
Digital presenceAutoimmune Registry financial estimates
Financial estimateRevenue estimate
Valuation estimate
Autoimmune Registry leadership team
Management profileNumber of profiles
Profiles1 record
Autoimmune Registry funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
Autoimmune Registry 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 Autoimmune Registry
What does Autoimmune Registry do?
Autoimmune Registry operates a free, online patient registry that tracks more than 100 autoimmune diseases and collects diagnostic, treatment, and outcome data directly from patients. Modeled on the National Cancer Registry, the platform lets individuals document their autoimmune disease journey and makes de-identified data available to researchers, clinicians, and partner institutions studying autoimmune disease epidemiology, treatment patterns, and clinical trial recruitment.
Is Autoimmune Registry a public or private company?
Autoimmune Registry is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was Autoimmune Registry founded?
Autoimmune Registry was founded in 2016. It employs 1 to 10 people.
Where is Autoimmune Registry based?
Autoimmune Registry is headquartered in Guilford, United States, in the North America region.
How does Autoimmune Registry make money?
One revenue line is on record: donations.
Who are Autoimmune Registry's main competitors?
Patient-Centered Outcomes Research Institute (PCORI) is listed as an others. Direct peers are American Autoimmune Related Diseases Association (AARDA), Scleroderma Foundation, National Organization for Rare Disorders (NORD), National Alzheimer's Coordinating Center (NACC), Lupus Foundation of America, Arthritis Foundation, Crohn's & Colitis Foundation (IBD Plexus) and Cystic Fibrosis Foundation Patient Registry. IQVIA is listed as a broad incumbent.
Does Autoimmune Registry have an API?
No public API is recorded for Autoimmune Registry.
What industry is Autoimmune Registry in?
Autoimmune Registry's product category is Patient Registry. Its primary akta.pro industry code is HLACAHAH, Patient Registries & Chronic Disease Registry Analytics, with a secondary code of HLAJAJAE, Disease Registries (Cancer, Immunization, Rare Disease, etc.).