ATHNdataset registry for people with bleeding and clotting disorders
Official title: American Thrombosis and Hemostasis Network ATHNdataset Registry
Run by American Thrombosis and Hemostasis Network · NCT06820515 · Data updated 2026-11-12
This registry collects health, treatment, and patient-reported information from people with bleeding and clotting disorders seen at ATHN-affiliated centers to help improve care and outcomes.
Quick facts
| Study type | Observational |
|---|---|
| Sex | All |
| Enrollment | 200000 (estimated) |
| Sponsor | American Thrombosis and Hemostasis Network Research network |
| Locations | 1 site (Hickory, North Carolina) |
| Status | Recruiting |
| Started | October 25, 2024 |
| Main results expected | October 25, 2054 |
| Study ends | October 31, 2055 |
| Registry record updated | April 21, 2026 |
| Trial ID | NCT06820515 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates are people of any age who have or are being evaluated for a bleeding or clotting disorder, have an encounter at an ATHN-affiliated center, and can provide consent or have a legally authorized representative provide consent.
✕Probably not a fit
People who do not receive care at ATHN-affiliated centers or who cannot provide consent are unlikely to be enrolled and therefore will not directly benefit from the registry's data.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
The ATHNdataset is an observational registry that securely collects and regularly updates clinical, laboratory, genetic, imaging, treatment, and patient-reported data from individuals seen at ATHN-affiliated Hemophilia Treatment Centers. Participants of any age who can consent or have a legally authorized representative agree to have their health records and surveys entered into a central database. The registry captures detailed information such as bleed events, medications, surgeries, pharmacokinetic results, and quality-of-life measures and is maintained over time to reflect current health status. Aggregated and de-identified data are made available to clinicians, researchers, and policymakers to study real-world outcomes and inform care and policy decisions.
Why it matters
Potential benefit: If successful, the registry could reveal real-world patterns of bleeding, treatment responses, and quality-of-life that help shape better treatments, guidelines, and policies for people with blood disorders.
How similar studies have gone: Similar large observational registries in hemophilia and sickle cell disease have previously produced useful real-world evidence that influenced treatment guidelines and policy.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: * Any participant evaluated for or the potential to have a blood disorder who has an encounter with an ATHN Affiliate. * Participants of any age. * Participant is able to provide consent or assent; a Legally Authorized Representative (LAR) may provide consent on a participant's behalf if a participant is unable to provide self-consent Exclusion Criteria: * Any participant unable to provide consent or assent to participate in the ATHNdataset
Where it's running
-
American Thrombosis and Hemostasis Network
Hickory, North Carolina, United States Recruiting
Study contacts
- Principal investigator: Tammuella Chrisentery-Singleton, M.D. — American Thrombosis and Hemostasis Network
- Study coordinator: Emily Callegari, RN
- Email: ecallegari@athn.org
- Phone: 8003602846
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
-
Long-term observation of non-cancer blood disorders
This study is tracking people with blood disorders like hemophilia and thrombosis for at least 15 years to see how their conditions change over time and gather useful information for doctors and researchers.
-
Observational study of blood clotting and bleeding disorders in Chinese patients
This study looks at blood clotting and bleeding problems in Chinese patients to see how common they are and what factors might affect them.
-
Long-term study of blood diseases in patients in China
This study is trying to gather detailed information from patients in China with blood diseases like leukemia and multiple myeloma to better understand how these conditions affect their lives and treatment options.
-
Non-invasive prenatal diagnosis for single gene disorders
This study is testing a new way to safely diagnose single-gene disorders in unborn babies using a simple blood test from the mother, starting as early as 9 weeks into the pregnancy.
-
International registry for patients with hemophilia and bleeding disorders
This study is collecting information from patients with hemophilia and bleeding disorders around the world to help improve treatment and understanding of these conditions.
-
SR604: a new treatment tested in adults with Hemophilia A/B or congenital Factor VII deficiency
This study tests a single and multiple doses of SR604 to see if it is safe and effective for adults with Hemophilia A or B, with or without inhibitors, and for those with congenital Factor VII deficiency.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.