ATHNdataset Registry

Conditions

• Bleeding Disorder
• Blood Disorder
• Glanzmann Thrombasthenia
• Hemophilia
• Hemophilia A
• Hemophilia B
• Sickle Cell Disease
• Thrombosis
• Von Willebrand Diseases

Eligibility Criteria

Sex

ALL

Age

N/A - N/A

Healthy Volunteers

Not accepted

Study Details

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.

Key Dates

Start date

Oct 25, 2024

Status verified

Apr 2026

Primary completion

Oct 25, 2054

Completion

Oct 31, 2055

Study Design

Enrollment

200,000 participants (estimated)

Arms

• Arm: 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

• Emily Callegari, RN
  8003602846
  [email protected]
• Carol Fedor, RN
  8003602846
  [email protected]

Locations (1)

Find similar trials in Hickory, NC

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