ATHNdataset Registry

NCT06820515 | Recruiting

• 1 other identifier: Pro00082318
• Study Type: observational
• Target: 200,000
• Locations: 1 country
• Sites: 1

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; Glanzmann Thrombasthenia; Bleeding Disorder; Blood Disorder; Von Willebrand Diseases

Keywords

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

Outcome Measures

Primary Outcomes (1)

• 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

  15 years

Secondary Outcomes (1)

• Contribute to scientific and public health reporting for the blood disorders community

  20 years

Study Arms (1)

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.

Eligibility Criteria

• Sex: all
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

* Data from participants who have previously provided authorization or consent (according to local requirements) and contributed data to the ATHNdataset will be retained. These participants will be offered a chance to provide updated consent if possible. * All future participants from ATHN Affiliates, who meet eligibility criteria and are able to provide consent or assent, will be enrolled prospectively. * Participants who have previously contributed data to the ATHNdataset under the terms of an authorization form, an informed consent form, or an assent form will be offered an opportunity to consent.

You may qualify if:

• 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

You may not qualify if:

• Any participant unable to provide consent or assent to participate in the ATHNdataset

Sponsors & Collaborators

• American Thrombosis and Hemostasis Network: lead

Study Sites (1)

American Thrombosis and Hemostasis Network

Hickory, North Carolina, 28601, United States

RECRUITING

MeSH Terms

Conditions

Hemophilia A; Thrombosis; Hemophilia B; Anemia, Sickle Cell; Thrombasthenia; Hemostatic Disorders; Hematologic Diseases; von Willebrand Diseases; Hemarthrosis

Condition Hierarchy (Ancestors)

Blood Coagulation Disorders, Inherited; Blood Coagulation Disorders; Hemic and Lymphatic Diseases; Coagulation Protein Disorders; Hemorrhagic Disorders; Genetic Diseases, Inborn; Congenital, Hereditary, and Neonatal Diseases and Abnormalities; Embolism and Thrombosis; Vascular Diseases; Cardiovascular Diseases; Genetic Diseases, X-Linked; Anemia, Hemolytic, Congenital; Anemia, Hemolytic; Anemia; Hemoglobinopathies; Blood Platelet Disorders; Joint Diseases; Musculoskeletal Diseases; Hemorrhage; Pathologic Processes; Pathological Conditions, Signs and Symptoms

Study Officials

• Tammuella Chrisentery-Singleton, M.D.

  American Thrombosis and Hemostasis Network

  PRINCIPAL INVESTIGATOR

Central Study Contacts

Emily Callegari, RN

CONTACT

8003602846; ecallegari@athn.org

Carol Fedor, RN

CONTACT

8003602846; cfedor@athn.org

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Sponsor Type: NETWORK
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: February 6, 2025
• First Posted: February 11, 2025
• Study Start: October 25, 2024
• Primary Completion (Estimated): October 25, 2054
• Study Completion (Estimated): October 31, 2055
• Last Updated: April 21, 2026

Record last verified: 2026-04

Locations

US (1)