Scientists watch LGMD progress in 205 patients over years
NCT ID NCT04475926
First seen Jun 25, 2026 · Last updated Jun 27, 2026 · Updated 1 time
Summary
This study follows 205 people with four types of limb-girdle muscular dystrophy (LGMD) to understand how the disease changes over time. Participants will have their muscle strength, movement, and breathing tested regularly for up to 5 years. No treatment is given; the goal is to learn more about the disease's natural history.
This is an AI summary of the original study and may miss details. Read our disclaimer.
Get updates
Get notified about this study
Sign up to get updates when this study changes or when new studies for LIMB GIRDLE MUSCULAR DYSTROPHY are added.
By submitting, you agree to our Terms of use
Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
Locations
-
Anne & Robert H. Lurie Children's Hospital of Chicago
Chicago, Illinois, 60611, United States
-
Arkansas Children's
Little Rock, Arkansas, 72202, United States
-
Azienda Ospedale Università Padova
Padova, Veneto, 35129, Italy
-
Barrow Neurological Institute
Phoenix, Arizona, 85013, United States
-
Children's Hospital - London Health Science Centre
London, Ontario, N6C 2R5, Canada
-
Children's Hospital of the King's Daughters
Norfolk, Virginia, 23507, United States
-
Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico
Milan, 20122, Italy
-
Hospital Sant Joan de Déu Universidad de Barcelona
Barcelona, 08950, Spain
-
Hospital de Clinicas de Porto Alegre (HCPA) - PPDS
Porto Alegre, Rio Grande do Sul, 90035-903, Brazil
-
Hôpital Universitaire des Enfants Reine Fabiola
Brussels, 1020, Belgium
-
Institute of Genetic Medicine, International Centre for Life
Newcastle upon Tyne, NE1 3BZ, United Kingdom
-
Istituto Giannina Gaslini
Genoa, Liguria, 16147, Italy
-
Karolinska Universitetssjukhuset Solna
Stockholm, Stockholm County, 17176, Sweden
-
Lokman Hekim Etlik Hastanesi
Ankara, 06100, Turkey (Türkiye)
-
Nationwide Children's Hospital
Columbus, Ohio, 43205, United States
-
Oregon Health and Science University
Portland, Oregon, 97068, United States
-
The Children's Hospital of Philadelphia
Philadelphia, Pennsylvania, 19104, United States
-
UCL Institute of Child Health & Great Ormond Street Hospital for Children
London, WC1N 1EH, United Kingdom
-
UZ Leuven
Leuven, Vlaams Brabant, 3000, Belgium
-
University Hospital Gent
Ghent, Oost-Vlaanderen, 9000, Belgium
-
University of California San Diego
La Jolla, California, 92037, United States
-
University of California, Davis Health Dept of PM&R
Sacramento, California, 95817, United States
-
University of Texas Southwestern Medical Center
Dallas, Texas, 75201, United States
-
University of Utah Hospital
Salt Lake City, Utah, 84112, United States
-
Universitätsklinikum Essen
Essen, North Rhine-Westphalia, D-45147, Germany
-
Zentrum für Kinderheilkunde und Jugendmedizin Uniklinikum Giessen Marburg (UKGM), Standort Giessen
Giessen, Hesse, 35392, Germany
More trials for these conditions
Other studies related to the condition(s) this trial covers.
- Can MRI scans reveal how ANO5 muscle disease progresses?
- Can MRI scans reveal the hidden pattern of muscle damage in a rare muscular dystrophy?
- Virtual group therapy aims to boost social skills in kids with rare muscle disease
- Paving the way: new study aims to sharpen tools for LGMD R1 trials
- One-Time gene therapy aims to halt rare muscle disease
- Experimental gene therapy targets rare muscle disease in first human test