Massive 15-Year study launches to track safety of new blood disorder drugs

NCT ID NCT04398628

Recruiting now Knowledge-focused Sponsor: American Thrombosis and Hemostasis Network Source: ClinicalTrials.gov ↗

Summary

This study aims to collect long-term safety and effectiveness data on treatments for various non-cancerous blood disorders, including hemophilia, von Willebrand disease, and platelet disorders. It will follow up to 3,000 participants for at least 15 years to see how newer, FDA-approved therapies perform in real-world use outside of initial clinical trials. The goal is to build a reliable, long-term picture of treatment safety and patient outcomes.

This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes NO responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

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Contacts and locations

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Study contacts

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Locations

Akron Children's Hospital - Showers Center for Cancer & Blood Disorders
RECRUITING

Akron, Ohio, 44308, United States

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American Thrombosis and Hemostasis Network
RECRUITING

Rochester, New York, 14626, United States

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Arizona Hemophilia and Thrombosis Treatment Center at Phoenix Children's Hospital
RECRUITING

Phoenix, Arizona, 85016, United States

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Arkansas Center for Bleeding Disorders
RECRUITING

Little Rock, Arkansas, 72202, United States

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Arnold Palmer Hospital for Children - The Haley Center for Children's Cancer and Blood Disorders
NOT_YET_RECRUITING

Orlando, Florida, 32806, United States

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Bleeding and Clotting Disorders Institute
RECRUITING

Peoria, Illinois, 61664, United States

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Central Michigan Children's Hospital of Michigan
RECRUITING

Detroit, Michigan, 48201, United States

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Children's Blood and Cancer Center of Central Texas
RECRUITING

Austin, Texas, 78723, United States

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Children's Hospital of Philadelphia
RECRUITING

Philadelphia, Pennsylvania, 19104, United States

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Children's Mercy Hospital - Kansas City
RECRUITING

Kansas City, Missouri, 64108, United States

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Children's National Hemophilia Center
RECRUITING

Washington D.C., District of Columbia, 20010, United States

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Childrens Hospital Los Angeles
RECRUITING

Los Angeles, California, 90027-6016, United States

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Cincinnati Children's Hospital Medical Center, Hemophilia & Thrombosis Center
RECRUITING

Cincinnati, Ohio, 45229, United States

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Comprehensive Bleeding Disorders Center at Emory University and Children's Healthcare of Atlanta
RECRUITING

Atlanta, Georgia, 30308, United States

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Comprehensive Center for Bleeding Disorders
RECRUITING

Milwaukee, Wisconsin, 53226, United States

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Comprehensive Hemophilia Treatment Center, University of North Carolina at Chapel Hill
RECRUITING

Chapel Hill, North Carolina, 27517, United States

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Connecticut Children's Medical Center
RECRUITING

Hartford, Connecticut, 06106, United States

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Cure 4 The Kids Foundation
RECRUITING

Las Vegas, Nevada, 89135, United States

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Dayton Children's Hemostasis and Thrombosis Center
RECRUITING

Dayton, Ohio, 45404, United States

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Delaware Hemophilia Treatment Center
RECRUITING

Wilmington, Delaware, 19801, United States

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East Carolina University Hemophilia Treatment Center
RECRUITING

Greenville, North Carolina, 27834, United States

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Emory/Children's Health Care of Atlanta
RECRUITING

Atlanta, Georgia, 30322, United States

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Georgetown University
RECRUITING

Washington D.C., District of Columbia, 20007, United States

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Gulf States Hemophilia and Thrombophilia Center
RECRUITING

Houston, Texas, 77030, United States

Contact Phone: •••-•••-•••• Email: •••••@•••••

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Hemophilia & Thrombosis Treatment Center at UC San Diego Health
RECRUITING

San Diego, California, 92121, United States

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Hemophilia Center of Western Pennsylvania
RECRUITING

Pittsburgh, Pennsylvania, 15213, United States

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Hemophilia Outreach Center Green Bay
RECRUITING

Green Bay, Wisconsin, 54311, United States

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Hemostasis and Thrombosis Center of Nevada
RECRUITING

Reno, Nevada, 89509, United States

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Henry Ford Health System Bleeding and Thrombosis Treatment Center
RECRUITING

Detroit, Michigan, 48202, United States

Contact Phone: •••-•••-•••• Email: •••••@•••••

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Indiana Hemophilia and Thrombosis Center
RECRUITING

Indianapolis, Indiana, 46260, United States

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Iowa Hemophilia and Thrombosis Center
RECRUITING

Iowa City, Iowa, 52242, United States

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Johns Hopkins All Children's Hospital
RECRUITING

St. Petersburg, Florida, 33701, United States

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Johns Hopkins University Hemophilia Treatment Center
RECRUITING

Baltimore, Maryland, 21287, United States

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Loma Linda Hemoglobinopathy and Inherited Bleeding Disorder Program
RECRUITING

San Bernardino, California, 92408, United States

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Louisiana Center for Bleeding and Clotting Disorders, Tulane University
RECRUITING

New Orleans, Louisiana, 70112, United States

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Maine Hemophilia and Thrombosis Center
RECRUITING

Scarborough, Maine, 04074, United States

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Massachusetts General Hospital Comprehensive Hemophilia and Thrombosis Treatment Center
NOT_YET_RECRUITING

Boston, Massachusetts, 02114, United States

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Mayo Comprehensive Hemophilia Center
RECRUITING

Rochester, Minnesota, 55905, United States

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Memorial Health University Medical Center
RECRUITING

Savannah, Georgia, 31403, United States

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Montefiore Medical Center
RECRUITING

The Bronx, New York, 10461, United States

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Nationwide Children's Hospital Columbus
RECRUITING

Columbus, Ohio, 43205, United States

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Newark Beth Israel Medical Center - Hemophilia Center
RECRUITING

Newark, New Jersey, 07122, United States

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North Texas Comprehensive Hemophilia Treatment Center
RECRUITING

Dallas, Texas, 75390, United States

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North Texas Hemophilia and Thrombosis Program - Pediatric Program / Center for Cancer & Blood Disorders
RECRUITING

Dallas, Texas, 75235, United States

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Northwell Health Hemostasis and Thrombosis Center at Long Island Jewish and Cohen Children's Medical Center
RECRUITING

Hyde Park, New York, 11040, United States

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Northwest Ohio Hemophilia Treatment Center at the Toledo Hospital
RECRUITING

Toledo, Ohio, 43606, United States

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Orthopaedic Institute for Children HTC
RECRUITING

Los Angeles, California, 90007, United States

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Penn Comprehensive Hemophilia and Thrombophilia Program/Hospital of the University of Pennsylvania
RECRUITING

Philadelphia, Pennsylvania, 19104, United States

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Rady Children's Hospital San Diego
RECRUITING

San Diego, California, 92123, United States

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Rhode Island Hospital Hemostasis and Thrombosis Center
RECRUITING

Providence, Rhode Island, 02903, United States

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Rush University Medical Center
RECRUITING

Chicago, Illinois, 60612, United States

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South Texas Comprehensive Hemophilia and Thrombophilia Treatment Center
RECRUITING

San Antonio, Texas, 78229, United States

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St. Joseph's Hospital Center for Bleeding & Clotting Disorders
RECRUITING

Tampa, Florida, 33607, United States

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St. Jude Affiliate Clinic at Novant Health Hemby Children's Hospital
RECRUITING

Charlotte, North Carolina, 28204, United States

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St. Jude Children's Research Hospital
RECRUITING

Memphis, Tennessee, 38105, United States

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Texas Children's Hemophilia & Thrombosis Center/Baylor College of Medicine
RECRUITING

Houston, Texas, 77030, United States

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The John Bouhasin Center for Children with Bleeding Disorders
RECRUITING

St Louis, Missouri, 63104, United States

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UCSF Benioff Children's Hospital Oakland
RECRUITING

Oakland, California, 94610, United States

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University Hospitals Health System Cleveland
RECRUITING

Cleveland, Ohio, 44106, United States

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University of California at Davis Hemophilia Treatment Center
RECRUITING

Sacramento, California, 95817, United States

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University of California, San Francisco Hemophilia & Thrombosis Center
RECRUITING

San Francisco, California, 94143, United States

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University of Cincinnati Medical Center Hemophilia Treatment Center
RECRUITING

Cincinnati, Ohio, 45267, United States

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University of Florida Hemophilia Treatment Center
RECRUITING

Gainesville, Florida, 32610, United States

Contact Phone: •••-•••-•••• Email: •••••@•••••

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University of Miami Comprehensive Hemophilia Treatment Center
RECRUITING

Miami, Florida, 33136, United States

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Contact Email: •••••@•••••
University of New Mexico Ted R. Montoya Hemophilia & Thrombosis Program
RECRUITING

Albuquerque, New Mexico, 87131, United States

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Vanderbilt University Medical Center
RECRUITING

Nashville, Tennessee, 37212, United States

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Wake Forest University Health Sciences
RECRUITING

Winston-Salem, North Carolina, 27157, United States

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Washington Center for Bleeding Disorders
RECRUITING

Seattle, Washington, 98101, United States

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Weill Cornell Medical College - New York Presbyterian Hospital
RECRUITING

New York, New York, 10065, United States

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Contact Phone: •••-•••-•••• Email: •••••@•••••
Western New York BloodCare
RECRUITING

Buffalo, New York, 14202, United States

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Yale Hemophilia Treatment Center
RECRUITING

New Haven, Connecticut, 06520, United States

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Conditions

Explore the condition pages connected to this study.

BLEEDING DISORDER CONNECTIVE TISSUE DISORDER FACTOR IX DEFICIENCY FACTOR VIII DEFICIENCY HEMATOLOGIC DISORDER HEMOPHILIA PLATELET DISORDER RARE BLEEDING DISORDER SICKLE CELL DISEASE THROMBOPHILIA THROMBOSIS VON WILLEBRAND DISEASES Β-THALASSEMIA