An observational study in Hemophilia, Thrombosis and Hemophilia A, sponsored by American Thrombosis and Hemostasis Network. Recruiting at 1 site in United States. Per ClinicalTrials.gov, last updated 2026-04-21.
Sponsored by American Thrombosis and Hemostasis Network · Observational
The Hemophilia Treatment Center (HTC) where you receive care is working with The American Thrombosis and Hemostasis Network (ATHN) to look at the quality of life of people with blood disorders and problems.
Doctors, scientists, policymakers, and other health care providers need a large amount of information from a lot of people to answer scientific, public health, and policy questions about better ways to treat blood disorders. They will use the information from the ATHNdataset to answer these questions.
Participants who agree to participate will let their health information be included in the ATHNdataset Registry, and the information will be updated regularly to reflect the participant's current health status. This registry includes collecting, storing and managing health information through a secure database. The following health information will be collected:
844 studies on the registry are indexed under Hemophilia A; 138 are open to participants now.
This study's planned enrollment of 200,000 is above the median of 81 across 310 observational studies indexed under Hemophilia A.
Browse Hemophilia A studies →American Thrombosis and Hemostasis Network is the lead sponsor of 8 studies on the registry; 3 are open to participants now.
Counted across the registry records on this site, refreshed daily.
Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
Exclusion Criteria:
The ATHNdataset is a large, robust real-world registry that can be queried to produce curated subsets of data to support clinical care, outcomes analysis, safety monitoring, practice of treatment, advocacy, public health reporting, quality improvement projects, and research initiatives. Initiatives relying on the ATHNdataset may focus on gaining a greater understanding of blood disorders, the complications of these disorders, their social and economic costs, and the effectiveness of treatments. The population includes all individuals diagnosed with or suspected to have a blood disorder. Participants will contribute data gathered during care encounters with an ATHN Affiliate.
Comprehensive real-world clinical data registry analysis, research, advocacy, and public health reporting for the blood disorders community
The ATHNdataset Registry objective is to develop a secure, comprehensive registry of real-world clinical data to support standardized comprehensive health information for persons living with blood disorders and public health reporting for the blood disorders community
Time frame: 15 years
Contribute to scientific and public health reporting for the blood disorders community
By providing a comprehensive registry for physicians, scientists, policy makers, and other health care stakeholders who require a large pool of participant information to answer questions related to blood disorders treatments
Time frame: 20 years
Eligibility is decided by the study team. Share this record with your doctor or contact the team directly.
Contact study teamGet an email when the registry record changes — status, dates, results — or when someone posts here.
Sign in to followQuestions and observations about this study, from anyone following it. Not medical advice, and not a channel to the study team — their contact details are on the registry record.
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Nothing here yet. If you are running this trial, taking part in it, or weighing whether to, this is the place to say so.
American Thrombosis and Hemostasis Network