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LGMD
Cardiac Care Survey 
patient perspective

Our goal is to develop a guideline that will capture the lived experiences of max 140 patients across multiple LGMD subtypes in order to identify patterns in access to care, treatment satisfaction, and daily quality of life. With this survey the patients’ voice will illustrate the differences between countries, and the results of this survey will be incorporated in an article and will be presented at the November 2026 ENMC workshop on cardiac care. In this way, the survey results will guide future patient engagement strategies and improve clinical communication. It reflect the patient voice in the ENMC workshop and with further implementation of outcome a masterclass for the cardiologists that treat LGMD patients (in partnership with Treat NMD). 

Your data is safe. 
We will anonymize all data before we present and store it at Treat NMD.

About You and your diagnose

Name (optional)

Untitled multiple choice field
A
B
C

city and country

Current Age

Current Age
A
B
C
D
E

Do you have a genetic report that confirms a diagnosis LGMD ?

Do you have a genetic report that confirms a diagnosis LGMD ?
A
B
C
D

If yes, please describe the mutation causing

Year Diagnosed + Age at LGMD Diagnosis:

Who diagnosed you? (e.g., GP, neurologist, geneticist, other):

Do you have family members with LGMD?

If Yes, please specify the subtype and your relationship to them:

Do you have other diagnoses (physical and/or psychological) such as diabetes, asthma, osteoporosis, depression, autism etc.? 

Has there ever been an abnormal liver parameter identified (ex: higher ALT or AST level than normal)

Have you once or ever smoked, drank and or used drugs? 

What is your BMI? If unknown, what is your height + weight? 

Do you use (cortico)steroids? (if Yes; which?)