ATHNdataset registry for people with bleeding and clotting disorders
American Thrombosis and Hemostasis Network ATHNdataset Registry
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 |
|---|---|
| Enrollment | 200000 (estimated) |
| Sex | All |
| Sponsor | American Thrombosis and Hemostasis Network Research network |
| Locations | 1 site (Hickory, North Carolina) |
| Trial ID | NCT06820515 on ClinicalTrials.gov |
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.
Who should consider this trial
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.
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.
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 performed: Similar large observational registries in hemophilia and sickle cell disease have previously produced useful real-world evidence that influenced treatment guidelines and policy.
Eligibility criteria
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 this trial is running
Hickory, North Carolina
- 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
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.