Clinical Trial Finder

ATHNdataset Registry

Study Purpose

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.

Recruitment Criteria

Accepts Healthy Volunteers

Healthy volunteers are participants who do not have a disease or condition, or related conditions or symptoms

 Unknown
Study Type

An interventional clinical study is where participants are assigned to receive one or more interventions (or no intervention) so that researchers can evaluate the effects of the interventions on biomedical or health-related outcomes.


An observational clinical study is where participants identified as belonging to study groups are assessed for biomedical or health outcomes.


Searching Both is inclusive of interventional and observational studies.

 Observational
Eligible Ages N/A and Over
Gender All
More Inclusion & Exclusion 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

Trial Details

Trial ID:

This trial id was obtained from ClinicalTrials.gov, a service of the U.S. National Institutes of Health, providing information on publicly and privately supported clinical studies of human participants with locations in all 50 States and in 196 countries.

 NCT06820515
Phase

Phase 1: Studies that emphasize safety and how the drug is metabolized and excreted in humans.

Phase 2: Studies that gather preliminary data on effectiveness (whether the drug works in people who have a certain disease or condition) and additional safety data.

Phase 3: Studies that gather more information about safety and effectiveness by studying different populations and different dosages and by using the drug in combination with other drugs.

Phase 4: Studies occurring after FDA has approved a drug for marketing, efficacy, or optimal use.
Lead Sponsor

The sponsor is the organization or person who oversees the clinical study and is responsible for analyzing the study data.

 American Thrombosis and Hemostasis Network
Principal Investigator

The person who is responsible for the scientific and technical direction of the entire clinical study.

 Tammuella Chrisentery-Singleton, M.D.
Principal Investigator Affiliation American Thrombosis and Hemostasis Network
Agency Class

Category of organization(s) involved as sponsor (and collaborator) supporting the trial.

 Other
Overall Status Enrolling by invitation
Countries United States
Conditions

The disease, disorder, syndrome, illness, or injury that is being studied.

 Hemophilia, Thrombosis, Hemophilia A, Hemophilia B, Sickle Cell Disease, Glanzmann Thrombasthenia, Bleeding Disorder, Blood Disorder, Von Willebrand Diseases
Additional Details

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

Arms & Interventions

Arms

: 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.

Interventions

Contact a Trial Team

If you are interested in learning more about this trial, find the trial site nearest to your location and contact the site coordinator via email or phone. We also strongly recommend that you consult with your healthcare provider about the trials that may interest you and refer to our terms of service below.

Hickory 4470778, North Carolina 4482348

Status

Address

American Thrombosis and Hemostasis Network

Hickory 4470778, North Carolina 4482348, 28601

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