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
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Locations
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American Family Children's Hospital
Madison, Wisconsin, 53792, United States
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Ann & Robert H. Lurie Children's Hospital of Chicago
Chicago, Illinois, 60611, United States
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Bone Research and Education Centre
Oakville, Ontario, ON L6M 1M1, Canada
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Boston Children's Hospital
Boston, Massachusetts, 02115, United States
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British Columbia Children's Hospital
Vancouver, British Columbia, V6H 3N1, Canada
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CETI - Centro de Estudos em Terapias Inovadoras
Curitiba, 80030-110, Brazil
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Children's Hospital Eastern Ontario Research Institute
Ottawa, K1H 5B2, Canada
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Children's Hospital Los Angeles
Los Angeles, California, 90027, United States
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Children's Hospital of Alabama
Birmingham, Alabama, 35233, United States
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Children's Hospital of Colorado
Aurora, Colorado, 80045, United States
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Children's Hospital of Philadelphia
Philadelphia, Pennsylvania, 19104, United States
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Children's Hospital of The King's Daughter
Norfolk, Virginia, 23507, United States
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Cincinnati Children's Hospital
Cincinnati, Ohio, 45229, United States
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Duke University
Durham, North Carolina, 27708, United States
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Hospital General de Niños Pedro de Elizalde
Buenos Aires, Buenos Aires F.D., C1270AAN, Argentina
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Hospital Infantil Universitario de San José
Bogotá, Cundinamarca, Colombia
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Hospital Privado Universitario de Córdoba
Córdoba, Argentina
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Hospital Universitario de San Vicente Fundación
Medellín, Antioquia, Colombia
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Hospital Universitário Alcides Carneiro (HUAC)
São José, Campina Grande - PB, 58400-398, Brazil
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Hospital das Clínicas da Faculdade de Medicina da Universidade de São Paulo
São Paulo, 05403-000, Brazil
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Hospital de Niños Dr. Ricardo Gutierrez
Buenos Aires, C1425EFD, Argentina
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Houston Methodist Research Institute
Houston, Texas, 77030, United States
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Indiana University School of Medicine
Indianapolis, Indiana, 46202-5167, United States
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Instituto de Medicina Avancada (IMA Brasil)
São Paulo, São Paulo, 05437-000, Brazil
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Johns Hopkins University
Baltimore, Maryland, 21218, United States
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Nationwide Children's Hospital
Columbus, Ohio, 43205, United States
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Pontificia Universidad Católica de Chile
Santiago, Santiago Metropolitan, Chile
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Rady Children's Hospital San Diego
San Diego, California, 92123, United States
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Seattle Children's Hospital
Seattle, Washington, 98105, United States
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Shiner's Hospital for Children - Canada
Montreal, Quebec, H4A 0A9, Canada
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The Ohio State University Wexner Medical Center
Columbus, Ohio, 43205, United States
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University of California San Francisco
San Francisco, California, 94158, United States
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University of Texas, Health Science Center
Houston, Texas, 77030, United States
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University of Virgina School of Medicine
Charlottesville, Virginia, 22903, United States
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Vanderbilt University - Department of Medicine
Nashville, Tennessee, 37212, United States
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Vanderbilt University - Department of Pediatrics
Nashville, Tennessee, 37232, United States
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Washington University School of Medicine
St Louis, Missouri, 63110, United States
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Yale University School of Medicine
New Haven, Connecticut, 06520, United States
Conditions
Explore the condition pages connected to this study.