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NCT03619863Completed

ATHN 7: Hemophilia Natural History Study

A Natural History Cohort Study of the Safety, Effectiveness, and Practice of Treatment for People With Hemophilia

Source: ClinicalTrials.gov · Last updated 12 Feb 2025

Brief summary (registry, in English)

This is a real-world study of the safety of the treatments used for people with hemophilia. The study will follow people with hemophilia A or B from across the country for about 4 years as they receive treatment. The hemophilia treatment center (HTC) physician and participant will decide on the FDA-approved treatment to be used which may include non-factor products, bypassing agents, or clotting factor replacement products. The goal of this research is to study the use of hemophilia treatment products and their outcomes.

Status (registry)
Completed
Study type
Observational
Enrollment
395 (actual)
First submitted
25 Jul 2018
Start date
24 Oct 2018
Primary completion date
31 May 2023
Lead sponsor
American Thrombosis and Hemostasis Network
Diseases
Haemophilia
NCT number
NCT03619863

What you commit to

  • Study type: Observational
  • Participants enrolled: 395
  • From 24 Oct 2018 to the primary completion date, 31 May 2023
  • 29 sites in 1 country
  • Visits and tests: ask the trial team, the registry does not list them

Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.

Who cannot take part

Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.

Prior treatment

  • Presence of concurrent hemophilia and a second hemostatic defect (low Von Willebrand Factor (VWF) without Von Willebrand disease (VWD) diagnosis is not excluded); and

Other illness

  • Presence of any known bleeding disorder other than congenital hemophilia A or B;

Other

  • Unable or unwilling to comply with the study protocol.

Who the study is looking for

  • Congenital hemophilia A or B of any severity with or without inhibitors receiving a current therapy, a non-factor product, or for whom use of a non-factor product is a possibility;
  • Able to give informed consent (by patient or parent/authorized guardian); and
  • Co-enrollment in the ATHNdataset.

Sex: All · Does not accept healthy volunteers

Full criteria on ClinicalTrials.gov

Sites (29)

Sites in registry order. Pick your city on the disease page to sort them by distance.

SiteCityCountrySite status
Comprehensive Bleeding Disorders Center at Emory University and Children's Healthcare of Atlanta
Coordinator of this site? Confirm its status
AtlantaUnited StatesUnknown status
Hemophilia and Thrombosis Center/ University of Colorado Anschutz Medical Campus
Coordinator of this site? Confirm its status
AuroraUnited StatesUnknown status
Massachusetts General Hospital Comprehensive Hemophilia and Thrombosis Treatment Center
Coordinator of this site? Confirm its status
BostonUnited StatesUnknown status
Rush University Medical Center
Coordinator of this site? Confirm its status
ChicagoUnited StatesUnknown status
The Center for Cancer and Blood Disorders, Children's Medical Center of Dallas
Coordinator of this site? Confirm its status
DallasUnited StatesUnknown status
Michigan State University Center for Bleeding and Clotting Disorders
Coordinator of this site? Confirm its status
East LansingUnited StatesUnknown status
University of Florida Hemophilia Treatment Center
Coordinator of this site? Confirm its status
GainesvilleUnited StatesUnknown status
Gulf States Hemophilia and Thrombosis Center
Coordinator of this site? Confirm its status
HoustonUnited StatesUnknown status
Indiana Hemophilia and Thrombosis Center (IHTC)
Coordinator of this site? Confirm its status
IndianapolisUnited StatesUnknown status
Children's Mercy Hospital, Kansas City
Coordinator of this site? Confirm its status
Kansas CityUnited StatesUnknown status
Hemostasis and Thrombosis Center of Nevada
Coordinator of this site? Confirm its status
Las VegasUnited StatesUnknown status
Orthopedic Institute for Children Hemophilia Program
Coordinator of this site? Confirm its status
Los AngelesUnited StatesUnknown status
Orthopaedic Institute for Children HTC
Coordinator of this site? Confirm its status
Los AngelesUnited StatesUnknown status
St. Jude Children's Research Hospital
Coordinator of this site? Confirm its status
MemphisUnited StatesUnknown status
Comprehensive Center for Bleeding Disorders
Coordinator of this site? Confirm its status
MilwaukeeUnited StatesUnknown status
Newark Beth Israel Medical Center
Coordinator of this site? Confirm its status
NewarkUnited StatesUnknown status
Louisiana Center for Bleeding and Clotting Disorders
Coordinator of this site? Confirm its status
New OrleansUnited StatesUnknown status
Louisiana Center for Bleeding and Clotting Disorders, Tulane University
Coordinator of this site? Confirm its status
New OrleansUnited StatesUnknown status
Weill Cornell Medicine
Coordinator of this site? Confirm its status
New YorkUnited StatesUnknown status
Penn Comprehensive Hemophilia and Thrombophilia Program/Hospital of the University of Pennsylvania
Coordinator of this site? Confirm its status
PhiladelphiaUnited StatesUnknown status
Children's Hospital of Philadelphia (CHOP)
Coordinator of this site? Confirm its status
PhiladelphiaUnited StatesUnknown status
Arizona Hemophilia and Thrombosis Center at Phoenix Children's Hospital
Coordinator of this site? Confirm its status
PhoenixUnited StatesUnknown status
The Hemophilia Center at Oregon Health & Science University
Coordinator of this site? Confirm its status
PortlandUnited StatesUnknown status
Hemostasis and Thrombosis Center of Nevada
Coordinator of this site? Confirm its status
RenoUnited StatesUnknown status
Rady Children's Hospital - San Diego
Coordinator of this site? Confirm its status
San DiegoUnited StatesUnknown status
Maine Hemophilia and Thrombosis Center
Coordinator of this site? Confirm its status
ScarboroughUnited StatesUnknown status
The John Bouhasin Center for Children with Bleeding Disorders
Coordinator of this site? Confirm its status
St LouisUnited StatesUnknown status
Northwest Ohio Hemophilia Treatment Center at the Toledo Hospital
Coordinator of this site? Confirm its status
ToledoUnited StatesUnknown status
Wake Forest University Health Science
Coordinator of this site? Confirm its status
Winston-SalemUnited StatesUnknown status

Related publications

This page is information, not medical advice. Discuss any trial with your doctor.