Bleeding Disorder, Blood Disorder, Glanzmann Thrombasthenia, Hemophilia, Hemophilia A, Hemophilia B, Sickle Cell Disease, Thrombosis, Von Willebrand Diseases
Conditions
Keywords
bleed event, bleed treatments, adverse events, joint bleed, bleeding disorder, bleeding symptoms
Brief summary
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
Interventions
None listed
Sponsors
American Thrombosis and Hemostasis Network
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
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
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Comprehensive real-world clinical data registry analysis, research, advocacy, and public health reporting for the blood disorders community | 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 |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Contribute to scientific and public health reporting for the blood disorders community | 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 |
Countries
United States
Contacts
CONTACTEmily Callegari, RN
CONTACTCarol Fedor, RN
PRINCIPAL_INVESTIGATORTammuella Chrisentery-Singleton, M.D.
American Thrombosis and Hemostasis Network
Outcome results
None listed