American Thrombosis and Hemostasis Network

What American Thrombosis and Hemostasis Network does

American Thrombosis and Hemostasis Network (ATHN) is a 501(c)(3) nonprofit founded in 2006 that operates a national data infrastructure and research network for individuals affected by bleeding and clotting disorders. The organization serves as the connective tissue between approximately 146 affiliated hemophilia treatment centers (HTCs) across the United States, clinical researchers, federal health agencies, pharmaceutical and biotechnology sponsors, and the patient community itself. Its primary assets are the ATHNdataset—described as the largest blood disorders real-world dataset in the United States, covering over 145,000 unique individuals across 150+ core data elements—and ATHN Systems, an integrated data management platform comprising Clinical Manager (clinical/patient care data capture) and Study Manager (research study data collection), with native integration to the WAPPS-Hemo pharmacokinetics service developed at McMaster University. The platform is SOC 2 Type II compliant across all five trust principles.

ATHN's revenue model is hybrid and grant-driven rather than transactional. The CDC provides $4,300,000 annually (100% federally funded) through a cooperative agreement supporting the Community Counts public health surveillance program, and HRSA's Maternal and Child Health Bureau funds the National Hemophilia Program Coordinating Center (NHPCC). A consortium of ten pharmaceutical manufacturers (CSL Behring, Sanofi, Genentech, Takeda, BioMarin, Hema Biologics, Hemab Therapeutics, Kedrion Biopharma, Pfizer, Regeneron) provides sustaining contributions and collaborates on data and research needs. ATHN redirects more than 50% of annual expenditures back to HTCs through Data Quality Counts grants (over $4.2 million awarded since 2008), DREAM Awards ($100,000 over 24 months for young investigators, with HTRS), and CARE Awards (up to $50,000). Patient-facing products include the free Robust Health mobile app and ATHNadvoy. Distribution to HTCs is direct (field/enterprise); distribution to patients is self-serve via app stores.

Beyond its core informatics infrastructure, ATHN operates named research programs (ATHN Transcends, a longitudinal natural history cohort across seven cohorts; completed projects ATHN 1–12 and My Life Our Future), the Office of Public Health Initiatives (OPHI) focused on health equity and an emerging sickle cell disease portfolio, the annual ATHN Data Summit, an educational webinar series, and a Document Library. Headcount is 11–50, with executive leadership under President & CEO Crystal Watson (since 2008) and Chief Science Officer Dr. Tammuella Chrisentery-Singleton (joined May 2023).

Name

American Thrombosis and Hemostasis Network

Legal name

American Thrombosis and Hemostasis Network, Inc.

Website

https://athn.org

Company type

Private

Founded year

2006

Operating status

Operating

Headcount range

11–50 employees

Short description

ATHN is a 501(c)(3) nonprofit that operates a national data infrastructure and research network for bleeding and clotting disorders, connecting 146 hemophilia treatment centers with researchers, federal agencies, and pharmaceutical sponsors through its integrated ATHN Systems platform and the ATHNdataset.

Ownership category

akta.pro rank

Product category

Healthcare Research Data Infrastructure

NAICS

Computing Infrastructure Providers, Data Processing, Web Hosting, and Related Services (518)

SIC

Services-Computer Programming, Data Processing, Etc. (7370), Services-Membership Organizations (8600)

akta.pro primary industry

Data Linkage, Registries & Longitudinal Cohort Surveillance (HLAJANAM)

akta.pro secondary industries

Data Integration, Interoperability & Reporting (ELR/HIE/CDC/NNDSS) (HLAJABAN), Interoperability Standards, Profiles & Implementation (HL7/FHIR/IHE) (HLACABAA), Clinical & Translational Informatics (Clinical Data Integration/Real-World Data for R&D) (HLAGAJAF), Health Data, Vital Statistics & Population Health Informatics (BPAIAJAM)

Keywords

• Hemophilia treatment network
• Bleeding disorders data
• Clinical research informatics
• Rare disease registry
• Thrombosis research data

Headquarters

HQ city

Hickory

HQ country

United States

HQ region

North America

Offices3 records

Markets served

GTM type

B2B

Offering type

Services

Cost components

Personnel, Operations, Technology or R&D, Infrastructure, Marketing or Sales, Others

Revenue model

1. Government Grant Funding: ATHN receives federal funding through cooperative agreements with CDC (for Community Counts public health surveillance) and HRSA (for National Hemophilia Program Coordinating Center). Community Counts is funded at $4,300,000 annually (100% funded by CDC/HHS).
2. Industry Consortium Contributions: Industry consortium members (CSL Behring, Sanofi, Genentech, Takeda, BioMarin, Hema Biologics, Hemab Therapeutics, Kedrion Biopharma, Pfizer, Regeneron) provide financial support to ensure ATHN's sustainability and support research initiatives.
3. Data Management Funding to HTCs: ATHN distributes over 50% of annual expenditures to HTCs in the form of financial support, grants/awards, project payments and infrastructure. This creates a sustainable ecosystem for data contribution.
4. Research Services: ATHN provides research implementation services to sponsors including electronic data capture, data management, study management, communications, and administrative services. They facilitate clinical research through their network of affiliated HTCs.

Pricing tiers

Go-to-market motion3 records

Distribution channels4 records

Marketing channels6 records

Core offering

ATHN operates a national data management and research infrastructure serving 146 affiliated hemophilia treatment centers (HTCs) in the United States. Its core offering, ATHN Systems, is an integrated platform combining Clinical Manager for clinical data capture and Study Manager for research data collection, supporting the ATHNdataset — the largest blood disorders real-world dataset in the U.S. with over 145,000 patient records and 150+ core data elements. ATHN also runs the CDC-funded Community Counts public health surveillance program and supports the National Hemophilia Program Coordinating Center (NHPCC).

Product overview

American Thrombosis and Hemostasis Network (ATHN) operates an integrated platform-and-services model centered on ATHN Systems, a unified data management infrastructure comprising Clinical Manager (clinical data management), Study Manager (research data collection), and a WAPPS-Hemo pharmacokinetics integration. ATHN maintains the ATHNdataset, a national de-identified database from 135+ affiliated hemophilia treatment centers containing over 150 core data elements. Patient-facing products include the Robust Health mobile app and ATHNadvoy. Research is supported through named studies (ATHN Transcends natural history cohort, ATHN 16, and completed projects ATHN 1–12, My Life Our Future), grant programs (Data Quality Counts, DREAM Award, CARE Award), and the Community Counts CDC public health surveillance project. Educational offerings include Webinars & Training and an annual Data Summit. The Office of Public Health Initiatives (OPHI) coordinates federal programs, health equity initiatives, and the National Hemophilia Program Coordinating Center (NHPCC). Together these products and programs form a cohesive national informatics and research platform connecting hemophilia treatment centers to advance clinical care and scientific discovery.

Differentiator

Problem solved

Functional benefit

Brands

• ATHNdataset: A vital community resource - a safe, secure national database of patient health information for people with bleeding and clotting disorders.
• ATHN Transcends
• Community Counts
• Robust Health
• ATHNadvoy
• ATHN Systems

Products and services

• ATHN Systems ATHN's seamless, integrated data management infrastructure that enables clinicians, researchers, and stakeholders across 146 affiliated hemophilia treatment centers to gather, manage, and analyze patient health data, supporting clinical care, clinic management, research, surveillance, and reporting to federal and state agencies.
• ATHN Clinical Manager Web-based electronic data capture application supporting clinical data management and day-to-day patient care operations at ATHN-affiliated hemophilia treatment centers.
• ATHN Study Manager Web-based application for study data collection and submission, supporting research studies across the ATHN-affiliated HTC network.
• ATHNdataset National database of de-identified patient health data from over 135 ATHN-affiliated hemophilia treatment centers, containing more than 150 core data elements covering demographics, health services, diagnosis, pharmaceutical treatment, surgeries/procedures, and objective parameters. Used to support research, quality improvement, and clinical care.
• Community Counts CDC public health surveillance project led by ATHN in partnership with the CDC and US Hemophilia Treatment Center Network, collecting data at over 140 HTCs on more than 145,000 patients to monitor trends, identify risk factors, and prevent complications in bleeding and clotting disorders. Funded at $4,300,000 annually through CDC cooperative agreement.
• ATHN Transcends ATHN's flagship natural history cohort study evaluating safety, effectiveness, and treatment practices for participants with congenital or acquired non-neoplastic blood disorders. Follows participants longitudinally for at least 15 years across 7 cohorts with additional study arms and modules.
• Robust Health Free mobile app for patients to track bleeds and treatments, connect with healthcare teams, use a health goal tracker, complete patient surveys, and generate comprehensive health reports. Developed in partnership with four hemophilia treatment centers.
• ATHNadvoy Mobile app that enables patients to track bleeds and infusions from any device, supporting patient-reported outcome collection between clinic visits.
• CARE Award Competitive research award of up to $50,000 for nurses, social workers, physical therapists, genetic counselors, and other HTC interdisciplinary care team members to use ATHNdataset for research questions that drive improvements in patient care. Funded by Novo Nordisk and Indiana Hemophilia & Thrombosis Center.
• DREAM Award Mentored research award of $100,000 over 24 months offered through collaboration of Hemostasis and Thrombosis Research Society (HTRS) and ATHN, supporting young investigators at ATHN-affiliated HTCs working under experienced mentors to use the ATHNdataset.
• Data Quality Counts Competitive annual award since 2008 providing funding to HTCs to build data management capacity and enrich the ATHNdataset. Over $4.2 million awarded to date. Made possible by The Hemophilia Alliance, The Alliance Pharmacy, and Indiana Hemophilia and Thrombosis Center.
• Office of Public Health Initiatives (OPHI) ATHN program aimed at leveraging ATHN's capabilities to support medically underserved populations by strengthening partnerships throughout the blood disorders community. Includes a Health Equity Program, the National Hemophilia Program Coordinating Center (NHPCC), and the Community Counts surveillance project.
• ATHN Data Summit Annual in-person conference bringing together ATHN-affiliated centers, collaborating partners, and community-based organizations to share discoveries and celebrate progress on behalf of the blood disorders community. The 2026 summit in New Orleans (October 21-22) marks ATHN's 20th anniversary under the theme 'Precise Data. Powerful Discovery.'
• Webinars and Training Educational webinars and training programs for ATHN-affiliated HTC staff covering quality improvement, research updates, Clinical Manager training, and ATHN 101 orientation. Includes Quality Improvement training with the Dartmouth Institute Microsystem Academy and Partners in Bleeding Disorders Education curriculum for continuing education of nurses and healthcare professionals.
• Sponsored Research Implementation Services ATHN provides research implementation services to pharmaceutical and academic sponsors through a collaborative process, offering electronic data capture, data management services, study management, communications services, and administrative services to research sponsors using the ATHN-affiliated HTC network.

Quantifiable outcome

• Over 145,000 unique patient records in Community Counts surveillance program
• +4 more outcomes

Named customers4 records

Segments5 records

Ideal customer profiles4 records

Technology focussed Yes

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration1 record

Feature6 records

Partnerships

23 partnerships are on record, tiered core and minor.

• CSL BehringcoreGTM or Marketing PartnerIndustry consortium partner helping ensure ATHN's sustainability and ability to make a difference over the long term. Provides important insight on needs of drug development companies regarding data types, analyses, clinical studies, and post-approval surveillance.
• SanoficoreGTM or Marketing PartnerIndustry consortium partner supporting ATHN's mission and providing insight on pharmaceutical company needs for real-world data and clinical study support.
• GenentechcoreGTM or Marketing PartnerIndustry Leader consortium partner contributing to ATHN's sustainability and providing pharmaceutical industry perspective on data and research needs.
• TakedacoreGTM or Marketing PartnerMajor supporter of DREAM Award and CARE Award funding. Provided educational grants for mentored research awards supporting young investigators at ATHN-affiliated HTCs since 2018.
• BioMarinminorGTM or Marketing PartnerIndustry Supporter consortium partner providing financial support for ATHN operations and research initiatives.
• Hema BiologicsminorGTM or Marketing PartnerIndustry Supporter consortium partner contributing to ATHN's mission to improve care for bleeding and clotting disorders.
• Hemab TherapeuticsminorGTM or Marketing PartnerIndustry Supporter consortium partner supporting ATHN's sustainability and research programs.
• Kedrion BiopharmaminorGTM or Marketing PartnerIndustry Supporter consortium partner contributing to ATHN's mission.
• PfizerminorGTM or Marketing PartnerIndustry Supporter consortium partner providing support for ATHN operations and initiatives.
• RegeneronminorGTM or Marketing PartnerIndustry Supporter consortium partner contributing to ATHN's sustainability.
• Centers for Disease Control and Prevention (CDC) Division of Blood DisorderscoreStrategic or Co-development PartnerGovernment partner providing grant funding for Community Counts public health surveillance program. CDC cooperative agreement totaling $4,300,000 annually supports data collection on people with bleeding and clotting disorders, monitoring trends, and identifying risk factors.
• Health Resources and Services Administration (HRSA) Maternal and Child Health BureaucoreStrategic or Co-development PartnerGovernment partner providing grant funding for establishment of National Hemophilia Program Coordinating Center (NHPCC) to promote access and quality of care for people with blood disorders.
• National Bleeding Disorders Foundation (NBDF)coreStrategic or Co-development PartnerCommunity partner dedicated to finding cures for inheritable blood and bleeding disorders through research, education, and advocacy. NBDF serves people across the US with all bleeding disorders including hemophilia, von Willebrand disease, rare factor deficiencies, and platelet disorders. ATHN collaborates with NBDF on projects to advance research and care.
• Plasminogen Deficiency FoundationminorStrategic or Co-development PartnerCommunity partner serving as resource for patients with plasminogen deficiency and their families. Activities include collecting data, engaging researchers, creating educational materials, and working with government agencies. ATHN supports their data collection efforts for people with PLGD.
• The Hemophilia AlliancecoreGTM or Marketing PartnerVisionary Community Partner providing dedicated support and generous contributions. Co-funder of Data Quality Counts grants along with The Alliance Pharmacy and Indiana Hemophilia & Thrombosis Center.
• Hemophilia of GeorgiaminorGTM or Marketing PartnerCommunity Supporter providing dedicated support and generous contributions to ATHN's commitment to safe, secure national infrastructure.
• Indiana Hemophilia & Thrombosis CenterminorGTM or Marketing PartnerCommunity Supporter co-funding Data Quality Counts grants. Also provided CARE Award funding in memoriam of ATHN's founding CEO Diane Aschman.
• The Alliance PharmacyminorGTM or Marketing PartnerCommunity Associate providing support for ATHN. Co-funder of Data Quality Counts grants alongside The Hemophilia Alliance and Indiana Hemophilia & Thrombosis Center.
• WAPPS-Hemo (McMaster University)coreTechnology or IntegrationTechnology integration partner. WAPPS-Hemo (Web-Accessed Population Pharmacokinetics Service for Hemophilia) developed under direction of Dr. Alfonso Iorio at McMaster University. Integration with ATHN Systems enables submitting PK requests directly from ATHN Systems, streamlining data entry for HTCs.
• Hemostasis and Thrombosis Research Society (HTRS)coreStrategic or Co-development PartnerCollaborative partner for DREAM Award - the first mentored research award offered through HTRS and ATHN collaboration. Designed to enhance care of patients with bleeding and clotting disorders through young investigator mentorship.
• Hemophilia AlliancecoreStrategic or Co-development PartnerPresents 'Advocacy in Action' session at ATHN Data Summit 2026. Provides ongoing support and advocacy for the bleeding disorders community.
• The Dartmouth Institute Microsystem Academy (TDIMA)minorStrategic or Co-development PartnerQuality improvement training partner collaborating with National Hemophilia Program Coordinating Center (NHPCC) to expand HTC capacity for continuous quality improvement through a national Quality Improvement Program.
• National Hemophilia Program Coordinating Center (NHPCC)coreStrategic or Co-development PartnerATHN serves as sponsoring organization for NHPCC which supports collaborative and integrated national infrastructure of regional hemophilia networks. Uses evidence-based practices to improve access to care, transition of care, and patient engagement.

Scale indicators10 records

Recent moves6 records

Expansion highlights5 records

Emerging players

• Verana Health: Curates real-world data from specialty medical societies (ophthalmology, neurology, urology) for life sciences research - comparable specialty-disease RWD model to ATHN, with similar reliance on physician network data contribution.

Broad incumbents

• TriNetX: Global health research network connecting providers, biopharma, and CROs to real-world patient data for protocol design, site identification, and real-world evidence - overlapping with ATHN's RWE and clinical study recruitment offering for pharma customers.
• National Cancer Institute SEER Program: The largest US population-based cancer surveillance program, operated under federal funding across multiple cancer registries. SEER is the gold-standard analog to ATHN's Community Counts public health surveillance model, but at vastly larger scale and disease scope.
• Medidata (Dassault Systèmes): Provides clinical trial data capture (Rave EDC) and real-world evidence technology used by pharma and academic research networks - a comparable electronic data capture and study management platform to ATHN Systems, though serving all therapeutic areas.
• IQVIA: Global leader in real-world evidence, clinical research services, and healthcare data. Competes with ATHN for pharma RWD and post-approval surveillance engagements with substantially broader disease coverage and a much larger sales and analytics organization.
• Flatiron Health: Real-world evidence platform for oncology with curated EHR-derived datasets and pharma research services. Comparable business model (specialty disease RWD + research services) and customer base (pharma RWE teams), though in a different disease area and at much larger scale under Roche ownership.

Regional players

• World Federation of Hemophilia: International NGO that maintains a global hemophilia patient database and supports HTCs worldwide. Operates the same disease-specific data infrastructure mission as ATHN but with a global rather than US scope, and could overlap with ATHN on international research collaborations.

Others

• National Bleeding Disorders Foundation (NBDF): Community advocacy and research organization for people with bleeding disorders. NBDF is a key ATHN partner (collaborating on research and the annual Bleeding Disorders Conference) rather than a competitor, but operates in the same patient community and could potentially expand into data infrastructure.

Direct peers

• Cystic Fibrosis Foundation Patient Registry: Operates the largest US cystic fibrosis patient registry with longitudinal real-world data, pharma partnerships, and a disease-specific care center network - structurally analogous to ATHN's HTC network and ATHNdataset for hemophilia and bleeding disorders.
• The Emmes Company: Operates disease-specific patient registries and provides clinical research data management services to federal agencies and academic consortia, closely mirroring ATHN's combined registry + research services model for rare and specialty diseases.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat6 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xx.com/ATHNnews
• Facebookfacebook.com/fincasalmendros
• LinkedInlinkedin.com/company/american-thrombosis-and-hemostasis-network-athn

Compliance1 record

Revenue estimate

Valuation estimate

Number of profiles

Profiles9 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about American Thrombosis and Hemostasis Network