Care Questionnaire Study for the LGMDs – Your help is needed!

The following is being shared on behalf of Lindsay Alfano, PT, DPT, PCS, Nationwide Children’s Hospital. The goal of the “Care Questionnaire Study for the LGMDs” is to understand current care practices for diagnosis and management of care for individuals living with limb-girdle muscular dystrophy (LGMD).

Two surveys have been developed:

For Individuals with LGMD

This survey asks general questions about your past medical history and about the current medical care you receive. Those who choose to participate will not be required to reveal sensitive information such as name, address, email, etc. All answers collected will be deidentified, meaning they will not be able to be traced back to the individual in any way.  

If you are interested in completing this survey for yourself or in your capacity as a caregiver, please CLICK THIS LINK .

For Clinicians

This survey asks clinicians general questions about their patient demographics and detailed questions about the care they provide, including the interdisciplinary team approach, assessments, and genetic testing. All answers collected will be deidentified, meaning they will not be able to be traced back to the individual or clinic in any way.

If you have contacts at institutions serving the LGMD community, we would ask you to please share this link: https://redcap.nchri.org/surveys/?s=RLFFJE8XDY

Please direct questions to Lindsay.Alfano@nationwidechildrens.org. Thank you in advance for your participation.