Actively Recruiting
American Thrombosis and Hemostasis Network ATHNdataset Registry
Led by American Thrombosis and Hemostasis Network · Updated on 2026-04-21
200000
Participants Needed
1
Research Sites
53 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
Researchers are gathering health information from people with blood disorders to better understand their quality of life and health outcomes. This observational study collects detailed data to help doctors, scientists, and policymakers find better ways to treat blood disorders like hemophilia, thrombosis, sickle cell disease, and others. The study is supported by the American Thrombosis and Hemostasis Network (ATHN) and aims to answer important scientific and public health questions. Participants' health data will be collected and regularly updated in a secure registry called the ATHNdataset. Information includes demographics, diagnosis details, family history, physical exams, vital signs, lab and genetic tests, imaging results, medications, treatments, surgeries, immunizations, and patient-reported outcomes. Data is gathered from routine care visits at ATHN Affiliate centers and may be used for research, advocacy, safety monitoring, and quality improvement projects. Participants will share their health information through encounters with ATHN Affiliate care providers. The study team will analyze this comprehensive data over 15 to 20 years to support clinical care and public health reporting for the blood disorders community. All relevant health details, questionnaires, and treatment information are securely stored and used to improve understanding and management of blood disorders.
CONDITIONS
Brief Title
ATHNdataset Registry
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Any participant evaluated for or suspected 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 may provide consent if the participant cannot provide self-consent
You will not qualify if you...
- Any participant unable to provide consent or assent to participate in the ATHNdataset
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person or remote) for consent and initial eligibility assessment
Duration - Up to 20 years
Participants who undergo routine care are observed, and health information is collected regularly to update the ATHNdataset Registry. This includes data from clinic visits, laboratory tests, imaging, treatments, and patient-reported outcomes.
Ongoing routine care visits as per participant's usual healthcare schedule
Trial Site Locations
Total: 1 location
1
American Thrombosis and Hemostasis Network
Hickory, North Carolina, United States, 28601
Actively Recruiting
Research Team
E
Emily Callegari, RN
C
Carol Fedor, RN
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
1
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