ATHNdataset Registry

Launched by AMERICAN THROMBOSIS AND HEMOSTASIS NETWORK · Feb 6, 2025

Keywords

ClinConnect Summary

This is not a traditional drug trial. It’s an observational registry called the ATHNdataset Registry, run by the American Thrombosis and Hemostasis Network (ATHN) with Hemophilia Treatment Centers. Its purpose is to collect real-world health information from people with bleeding or clotting disorders to better understand these conditions and how they are treated in everyday care. Data will be gathered over many years (the study plans to follow people for about 15–20 years) and used to support research, public health reporting, and quality improvement in care.

Who can join and what to expect: Anyone who is being evaluated for a blood disorder and who visits an ATHN Affiliate clinic can be eligible, regardless of age, as long as they (or a parent/guardian) can give consent. Participation is voluntary and data come from a wide range of sources, including medical records, tests, imaging, medications, procedures, and even patient-reported information like how the disorder affects daily life. If you have previously contributed data to ATHNdataset, you may be asked to provide updated consent; future participants will be enrolled with consent going forward. All information is stored in a secure database and used to help doctors, researchers, policymakers, and patients learn more about blood disorders and how to improve care.

Gender

ALL

Eligibility 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