LGMD2A Patients Sought for Natural History Study at Nationwide Children’s Hospital

A natural history study of limb girdle muscular dystrophy type 2A (LGMD2A, a form of calpainopathy) has been initiated by Linda Lowes, PT, PhD at Nationwide Children’s Hospital in Columbus, Ohio.

The aim of this study is to observe patients in order to learn more about how having LGMD2A affects their lives over time. More specifically, the investigators would like to know how an affected individual’s strength and ability to perform routine activities changes over time. This information can be used to plan clinical trials that may become available in the future.

To participate, patients must be able to travel to Columbus, Ohio for the testing
Volunteers will be asked to complete activities with their arms and legs, answer questionnaires, and participate in muscle strength testing
At each visit, the testing may take up to 90 minutes
They would like to complete the tests every six months if possible, but this is not a requirement to participate
There are no age or ability requirements to participate in the study

This is an observational study. As such, no medication will be provided as part of the study, and study procedures will have no impact on the medical care delivered to patients participating in this study.

PLEASE CLICK HERE FOR ADDITIONAL INFORMATION.

Individuals interested in participating should email NMDtrialinfo@nationwidechildrens.org or call (614)722-6881.

LGMD2A Patients Sought for Natural History Study at Nationwide Children’s Hospital