ATHNdataset Registry

American Thrombosis and Hemostasis Network (ATHN)

Status: Invitation-only

Conditions: Von Willebrand Diseases; Hemophilia B; Thrombosis; Glanzmann Thrombasthenia; Bleeding Disorder; Sickle Cell Disease; Blood Disorder; Hemophilia A; Hemophilia

Study type: Observational

Funder types: NETWORK

Identifiers

NCT06820515

Pro00082318

Details and patient eligibility

About

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.

Full description

Participants who agree to participate will let their health information be included in the ATHNdataset Registry, and the information will be updated regularly to reflect the participant's current health status. This registry includes collecting, storing and managing health information through a secure database. The following health information will be collected:

• Demographics (e.g., age, gender, income, education/occupation)
• The type of blood disorder you have
• Date you were diagnosed, or symptoms began
• Family history of the disorder
• Testing and assessments
• Physical exams
• Height, weight
• Vital signs, including blood pressure and heart rate
• Laboratory tests (results from blood or urine testing, or biological specimens)
• Genetic test results
• Imaging results (X-rays, CT scans, etc.)
• Pharmacokinetic testing results (how drugs are processed in the body)
• Medications used and any problems with use
• Types of bleeds, pain and clotting problems
• Treatments that stop your bleeding or clotting problems from occurring or getting worse
• Surgeries and/or procedures
• Immunizations (vaccines)
• Devices
• Routine care visits and injuries (trauma)
• Other illnesses and diseases you may have
• Allergies
• Patient-reported outcomes (PROs), questionnaires, and surveys
• Payment details for treatment, including insurance companies and health plans

Enrollment: 200,000 estimated patients

Sex: All

Volunteers: No Healthy Volunteers

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

Trial design

200,000 participants in 1 patient group

Blood Disorders

Description:

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.