Scientists track rare muscle disease to unlock future treatments
NCT ID NCT04475926
First seen Nov 06, 2025 · Last updated May 15, 2026 · Updated 19 times
Summary
This study follows 205 people with certain types of limb-girdle muscular dystrophy (LGMD) to learn how the disease changes over time. Researchers measure muscle strength, walking ability, and lung function for up to 5 years. The goal is to better understand the disease, which may help design future treatments. Participants are not given any experimental drug—only monitored.
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This is a summary of
the original study
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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.
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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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
Padova, 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.