Limb Girdle Muscular Dystrophy 2I Survey Study

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Limb Girdle Muscular Dystrophy 2I Survey Study

Status
Recruiting
Study area
Neurology
Other

Principal investigator

Masa Sasagawa, ND, PhD(c)
Project period
September 2017 – December 2018
Funded by
LGMD2i Research Fund

Description:
This is a survey study for genetically confirmed Limb Girdle Muscular Dystrophy type 2I (LGMD2I) patients about the use of dietary supplements and natural remedies. Through this survey, participants can share their knowledge and experiences with the rest of the LGMD2I community.

The goals of this survey are to:

  • Gather information on natural remedies that improve the quality of individuals affected by LGMD2I
  • Share collected information with the rest of the community
  • Inform researchers about natural remedies used by LGMD2I individuals.

The survey takes 60 – 90 minutes to complete. You can exit the survey at any time after saving your answer, and resume your survey by typing the Return Code that will be provided to you when you exit.

Eligibility:
This survey is geared specifically for people with a confirmed genetic status of LGMD2I. You will be asked to voluntarily provide the genetic information in order to correlate the disease severity to a type of mutation. The survey is anonymous and the IP address of the computer will not be stored.

To participate in the survey study you must:

  • Be 18 years old or older
  •  Be able to understand English
  • Have genetically confirmed LGMD2I diagnosis
  • Have a willingness to enter your genetic information in the survey

Any of the criteria below excludes you from participating:

  • Unable to provide the genetic mutation information
  •  Unable to electrically sign the informed consent form

 If you are eligible and would like to participate, click on the link is the below:

https://redcap.bastyr.edu/redcap/surveys/?s=YHLMDMFYYP