ATHNdataset Registry
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- This is an observational study: the protocol does not assign a study treatment.
- Who it may be relevant to
- Registry conditions: Hemophilia, Thrombosis, Hemophilia A, Hemophilia B. Basic parameters: No limits · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- United States
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
Unsure about the terms? Read our patient guide →
Official title
American Thrombosis and Hemostasis Network ATHNdataset Registry
Overview
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.
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
Primary outcome measures
- Comprehensive real-world clinical data registry analysis, research, advocacy, and public health reporting for the blood disorders community [Time frame: 15 years]
Secondary outcome measures (1)
- Contribute to scientific and public health reporting for the blood disorders community [Time frame: 20 years]
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
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Study design
- Observational model
- Cohort
Study locations
United States · 1 center
- American Thrombosis and Hemostasis Network — Hickory
Identifiers
NCT: NCT06820515 · Pro00082318