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.

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.

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.

Our safety recommendation!

By submitting, you agree to our Terms of use

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

    Padua, 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

Conditions

Explore the condition pages connected to this study.