Limb Girdle Muscular Dystrophy (LGMD) Natural History
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ClinicalTrials.gov Identifier: NCT01783509 |
Recruitment Status
:
Completed
First Posted
: February 5, 2013
Last Update Posted
: July 19, 2017
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Condition or disease |
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Muscular Dystrophies, Limb-Girdle (GENETICALLY CONFIRMED) |
Study Type : | Observational [Patient Registry] |
Actual Enrollment : | 13 participants |
Observational Model: | Cohort |
Time Perspective: | Prospective |
Target Follow-Up Duration: | 20 Years |
Official Title: | Longitudinal Assessment and Genetic Understanding of Limb-Girdle Muscular Dystrophy |
Study Start Date : | November 2011 |
Actual Primary Completion Date : | July 2017 |
Actual Study Completion Date : | July 2017 |

Group/Cohort |
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LGMD
Patients with GENETICALLY CONFIRMED limb girdle muscular dystrophy
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- Comprehensive clinical evaluation of individuals with GENETICALLY CONFIRMED LGMD, according to the study protocol, in order to evaluate disease progression [ Time Frame: yearly up to 10 years ]
Biospecimen Retention: Samples Without DNA

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Ages Eligible for Study: | 6 Years and older (Child, Adult, Senior) |
Sexes Eligible for Study: | All |
Accepts Healthy Volunteers: | No |
Sampling Method: | Non-Probability Sample |
Inclusion Criteria:
- You have a GENETICALLY CONFIRMED diagnosis of Limb Girdle Muscular Dystrophy
- You must be at least 6 years of age or older (if under 18 you will need Parental consent)
- You must be able to travel to the study site
- You must be able to provide a DNA/Gene testing report that confirms a diagnosis of LGMD
Exclusion Criteria:
- You or your child do not have a diagnosis of LGMD
- Your child is under age 6
- You or your child are not able to travel to the study site

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT01783509
United States, North Carolina | |
Carolinas Medical Center - Pediatrics | |
Charlotte, North Carolina, United States, 28203 |
Principal Investigator: | Ibrahim Binalsheikh, MD | Carolinas Medical Center - Pediatrics |
Responsible Party: | Carolinas Healthcare System |
ClinicalTrials.gov Identifier: | NCT01783509 History of Changes |
Other Study ID Numbers: |
LGMD Nat Hx |
First Posted: | February 5, 2013 Key Record Dates |
Last Update Posted: | July 19, 2017 |
Last Verified: | July 2017 |
Keywords provided by Carolinas Healthcare System:
GENETICALLY CONFIRMED limb girdle muscular dystrophy |
Additional relevant MeSH terms:
Muscular Dystrophies Muscular Dystrophies, Limb-Girdle Muscular Disorders, Atrophic Muscular Diseases |
Musculoskeletal Diseases Neuromuscular Diseases Nervous System Diseases Genetic Diseases, Inborn |