ATHNdataset Registry

April 16, 2026 updated by: American Thrombosis and Hemostasis Network

American Thrombosis and Hemostasis Network ATHNdataset Registry

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.

Study Overview

Status

Recruiting

Conditions

Detailed 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

Study Type

Observational

Enrollment (Estimated)

200000

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Contact

Study Contact Backup

  • Name: Carol Fedor, RN
  • Phone Number: 122 8003602846
  • Email: cfedor@athn.org

Study Locations

  • United States
    • North Carolina
      • Hickory, North Carolina, United States, 28601
        • Recruiting
        • American Thrombosis and Hemostasis Network
        • Contact:

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

  • Child
  • Adult
  • Older Adult

Accepts Healthy Volunteers

N/A

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.

Description

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 Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

Cohorts and Interventions

Group / Cohort
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.

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Measure Description
Time Frame
Comprehensive real-world clinical data registry analysis, research, advocacy, and public health reporting for the blood disorders community
Time Frame: 15 years
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 Outcome Measures

Outcome Measure
Measure Description
Time Frame
Contribute to scientific and public health reporting for the blood disorders community
Time Frame: 20 years
By providing a comprehensive registry for physicians, scientists, policy makers, and other health care stakeholders who require a large pool of participant information to answer questions related to blood disorders treatments
20 years

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

American Thrombosis and Hemostasis Network

Investigators

  • Principal Investigator: Tammuella Chrisentery-Singleton, M.D., American Thrombosis and Hemostasis Network

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start (Actual)

October 25, 2024

Primary Completion (Estimated)

October 25, 2054

Study Completion (Estimated)

October 31, 2055

Study Registration Dates

First Submitted

February 6, 2025

First Submitted That Met QC Criteria

February 6, 2025

First Posted (Actual)

February 11, 2025

Study Record Updates

Last Update Posted (Actual)

April 21, 2026

Last Update Submitted That Met QC Criteria

April 16, 2026

Last Verified

April 1, 2026

More Information

Terms related to this study

Keywords

Additional Relevant MeSH Terms

Other Study ID Numbers

  • Pro00082318

Drug and device information, study documents

Studies a U.S. FDA-regulated drug product

No

Studies a U.S. FDA-regulated device product

No

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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