Recruiting

Observational Study

Sponsor:

American Thrombosis and Hemostasis Network

Code:

NCT06820515

Conditions

Hemophilia

Thrombosis

Hemophilia A

Hemophilia B

Sickle Cell Disease

Eligibility Criteria

Sex: All

Age: 0+

Healthy Volunteers: Not accepted

Study Details

Brief summary:

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.

Conditions

Hemophilia

Thrombosis

Hemophilia A

Hemophilia B

Sickle Cell Disease

Study ID

NCT06820515

Start date

Oct 25, 2024

Status verified date

Apr, 2026

Completion date

Oct 31, 2055

Anticipated

Primary completion date

Oct 25, 2054

Anticipated

Eligibility Criteria

Eligibility Criteria

Sex: All

Age: 0+

Healthy Volunteers: Not accepted

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

Study Design

Enrollment

200000 participants

Anticipated

Interventions and Outcome Measures

Arms

Blood Disorders

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.

Primary outcome measure

  • Comprehensive real-world clinical data registry analysis, research, advocacy, and public health reporting for the blood disorders community [ Time Frame: 15 years ]

Central Contacts and Locations

Central contacts

Emily Callegari, RN

8003602846ecallegari@athn.org

Carol Fedor, RN

8003602846cfedor@athn.org

Locations

American Thrombosis and Hemostasis Network

Recruiting

Hickory, North Carolina, United States, 28601

Contacts

Carol Fedor, ND, RN

cfedor@athn.org

More Information

Sponsor

American Thrombosis and Hemostasis Network

Last update posted

Apr 21, 2026

Last verified

Apr, 2026

Keywords

  • bleed event
  • bleed treatments
  • adverse events
  • joint bleed
  • bleeding disorder
  • bleeding symptoms

Trial information was received from ClinicalTrials.gov and was last updated on 2026-09-10. This information was provided to ClinicalTrials.gov by American Thrombosis and Hemostasis Network on 2026-04-21.