Global effort tracks rare bone disease over time

NCT ID NCT03651505

Summary

This study follows people with X-linked hypophosphatemia (XLH), a rare genetic bone disorder, to better understand how the disease progresses over time. Researchers are tracking 782 patients who are either receiving burosumab treatment or not receiving treatment to monitor long-term safety and effectiveness. The goal is to gather real-world information about how the disease affects people and how treatment impacts their health over many years.

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

Locations

  • American Family Children's Hospital

    Madison, Wisconsin, 53792, United States

  • Ann & Robert H. Lurie Children's Hospital of Chicago

    Chicago, Illinois, 60611, United States

  • Bone Research and Education Centre

    Oakville, Ontario, ON L6M 1M1, Canada

  • Boston Children's Hospital

    Boston, Massachusetts, 02115, United States

  • British Columbia Children's Hospital

    Vancouver, British Columbia, V6H 3N1, Canada

  • CETI - Centro de Estudos em Terapias Inovadoras

    Curitiba, 80030-110, Brazil

  • Children's Hospital Eastern Ontario Research Institute

    Ottawa, K1H 5B2, Canada

  • Children's Hospital Los Angeles

    Los Angeles, California, 90027, United States

  • Children's Hospital of Alabama

    Birmingham, Alabama, 35233, United States

  • Children's Hospital of Colorado

    Aurora, Colorado, 80045, United States

  • Children's Hospital of Philadelphia

    Philadelphia, Pennsylvania, 19104, United States

  • Children's Hospital of The King's Daughter

    Norfolk, Virginia, 23507, United States

  • Cincinnati Children's Hospital

    Cincinnati, Ohio, 45229, United States

  • Duke University

    Durham, North Carolina, 27708, United States

  • Hospital General de Niños Pedro de Elizalde

    Buenos Aires, Buenos Aires F.D., C1270AAN, Argentina

  • Hospital Infantil Universitario de San José

    Bogotá, Cundinamarca, Colombia

  • Hospital Privado Universitario de Córdoba

    Córdoba, Argentina

  • Hospital Universitario de San Vicente Fundación

    Medellín, Antioquia, Colombia

  • Hospital Universitário Alcides Carneiro (HUAC)

    São José, Campina Grande - PB, 58400-398, Brazil

  • Hospital das Clínicas da Faculdade de Medicina da Universidade de São Paulo

    São Paulo, 05403-000, Brazil

  • Hospital de Niños Dr. Ricardo Gutierrez

    Buenos Aires, C1425EFD, Argentina

  • Houston Methodist Research Institute

    Houston, Texas, 77030, United States

  • Indiana University School of Medicine

    Indianapolis, Indiana, 46202-5167, United States

  • Instituto de Medicina Avancada (IMA Brasil)

    São Paulo, São Paulo, 05437-000, Brazil

  • Johns Hopkins University

    Baltimore, Maryland, 21218, United States

  • Nationwide Children's Hospital

    Columbus, Ohio, 43205, United States

  • Pontificia Universidad Católica de Chile

    Santiago, Santiago Metropolitan, Chile

  • Rady Children's Hospital San Diego

    San Diego, California, 92123, United States

  • Seattle Children's Hospital

    Seattle, Washington, 98105, United States

  • Shiner's Hospital for Children - Canada

    Montreal, Quebec, H4A 0A9, Canada

  • The Ohio State University Wexner Medical Center

    Columbus, Ohio, 43205, United States

  • University of California San Francisco

    San Francisco, California, 94158, United States

  • University of Texas, Health Science Center

    Houston, Texas, 77030, United States

  • University of Virgina School of Medicine

    Charlottesville, Virginia, 22903, United States

  • Vanderbilt University - Department of Medicine

    Nashville, Tennessee, 37212, United States

  • Vanderbilt University - Department of Pediatrics

    Nashville, Tennessee, 37232, United States

  • Washington University School of Medicine

    St Louis, Missouri, 63110, United States

  • Yale University School of Medicine

    New Haven, Connecticut, 06520, United States

Conditions

Explore the condition pages connected to this study.