Limb girdle muscular dystrophy (LGMD) is in fact not one single condition but a number of different inherited muscular dystrophies that are grouped under the label “limb girdle” because they generally affect the pelvic and shoulder girdles, causing weakness in the muscles in the top part of the arms and shoulders and the hips and thighs. These muscles are often called the “proximal” muscles because they are nearest to the body. The weakness usually affects the legs first, followed by the arms. It rarely affects the face. Some types of LGMD may also cause weakness in the “distal” muscles – those in the feet, ankles and calves, and the hands and wrists. A few specific types may cause heart problems or weakness of the breathing muscles.
Registries for Limb Girdle Muscular Dystrophy
Austria
Bulgaria
China
Croatia
Denmark
Egypt
Georgia
Germany
India
Latvia New Zealand
Poland
Slovenia
Spain
Sweden
Turkey
World Wide
World Wide World Wide World Wide
Current trials in LGMD
TREAT-NMD is working closely with the pharmaceutical companies planning trials in neuromuscular diseases. The resources and expertise available through the network can make it much easier for companies to do trials, and many of the doctors involved in the network are principal investigators for the trials that are currently ongoing.
Nevertheless, we cannot ourselves keep an up-to-date overview of all the trials that are currently happening across the world. The most comprehensive online listing of trials is at clinicaltrials.gov – companies are obliged to provide details of their trials there.
The table below lists all LGMD trials registered or updated on clinicaltrials.gov in the last 1000 days. Because it links directly to clinicaltrials.gov it is automatically updated whenever the information on clinicaltrials.gov changes.
Please note that TREAT-NMD can take no responsibility for the accuracy of the information below, which is pulled directly from clinicaltrials.gov.
Patient organisations
Canadian Neuromuscular Disease Registry – CNDR – Canada
Coalition to Cure Calpain 3 – United States of America 
Gruppo Familiari Beta-Sarcoglicanopatie Onlus (GFB ONLUS) – Italy 
Jain Foundation – United States of America 
LGMD2D Foundation – United States of America 
Limb Girdle Muscular Dystrophy 2i Research Fund – United States of America 
Prothelia Inc – United States of America 
Registry Publications - Summary Articles
Limb-girdle muscular dystrophies — international collaborations for translational research
Published : April, 2016
Meetings and events
Event: TREAT-NMD Expert LGMD Masterclass
Start Date: September 23, 2020
Location: Georgetown University, O Street Northwest, Washington, DC, USA
Event: National Limb Girdle Muscular Dystrophy Conference 2019
Start Date: August 30, 2019
Location: Hyatt Regency Chicago, Chicago, IL, USA
