Scientists launch global effort to map the journey of a rare muscle disease
NCT ID NCT04475926
Summary
This study aims to understand how four specific types of limb-girdle muscular dystrophy (LGMD) change over time. It will follow 205 participants, aged 4 and older, for up to 5 years to track their mobility, lung function, and other symptoms. The goal is to gather detailed information about the disease's natural course to help design better future treatments.
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Contacts and locations
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Locations
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Anne & Robert H. Lurie Children's Hospital of Chicago
Chicago, Illinois, 60611, United States
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Arkansas Children's
Little Rock, Arkansas, 72202, United States
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Azienda Ospedale Università Padova
Padua, Veneto, 35129, Italy
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Barrow Neurological Institute
Phoenix, Arizona, 85013, United States
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Children's Hospital - London Health Science Centre
London, Ontario, N6C 2R5, Canada
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Children's Hospital of the King's Daughters
Norfolk, Virginia, 23507, United States
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Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico
Milan, 20122, Italy
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Hospital Sant Joan de Déu Universidad de Barcelona
Barcelona, 08950, Spain
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Hospital de Clinicas de Porto Alegre (HCPA) - PPDS
Porto Alegre, Rio Grande do Sul, 90035-903, Brazil
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Hôpital Universitaire des Enfants Reine Fabiola
Brussels, 1020, Belgium
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Institute of Genetic Medicine, International Centre for Life
Newcastle upon Tyne, NE1 3BZ, United Kingdom
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Istituto Giannina Gaslini
Genoa, Liguria, 16147, Italy
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Karolinska Universitetssjukhuset Solna
Stockholm, Stockholm County, 17176, Sweden
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Lokman Hekim Etlik Hastanesi
Ankara, 06100, Turkey (Türkiye)
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Nationwide Children's Hospital
Columbus, Ohio, 43205, United States
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Oregon Health and Science University
Portland, Oregon, 97068, United States
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The Children's Hospital of Philadelphia
Philadelphia, Pennsylvania, 19104, United States
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UCL Institute of Child Health & Great Ormond Street Hospital for Children
London, WC1N 1EH, United Kingdom
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UZ Leuven
Leuven, Vlaams Brabant, 3000, Belgium
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University Hospital Gent
Ghent, Oost-Vlaanderen, 9000, Belgium
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University of California San Diego
La Jolla, California, 92037, United States
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University of California, Davis Health Dept of PM&R
Sacramento, California, 95817, United States
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University of Texas Southwestern Medical Center
Dallas, Texas, 75201, United States
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University of Utah Hospital
Salt Lake City, Utah, 84112, United States
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Universitätsklinikum Essen
Essen, North Rhine-Westphalia, D-45147, Germany
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Zentrum für Kinderheilkunde und Jugendmedizin Uniklinikum Giessen Marburg (UKGM), Standort Giessen
Giessen, Hesse, 35392, Germany
Conditions
Explore the condition pages connected to this study.