Clinical Research Alert: Natural History Study of Individuals with Non-Dystrophic Myotonias

Researchers at the Center for Health + Technology at the University of Rochester are seeking individuals with non-dystrophic myotonias (NDM) to participate in an observational interview. The findings of the interviews will help to better understand the symptoms experienced by people with NDM.

The study

This observational study consists of a one-time Zoom interview that will last approximately one hour. Eligible participants will be contacted by an external recruitment partner to receive information about the study. Then, they will be directed to make contact with the research team to provide informed consent prior to the study enrollment. The Zoom interview will be scheduled with the study team via email. The interview questions will focus on symptoms of NDM that participants feel are most prevalent and impactful. All demographic and clinical data provided during the interview will be stored securely, with access restricted to study team members only.

Study criteria

To be eligible for the research study, individuals must meet the following inclusion criteria:

• An individual with a diagnosis of NDM, including but not limited to myotonia congentia, paramyotonia congenita, potassium-aggravated myotonia, Thomsen’s disease, and/or Becker’s disease
• 18 years of age or older
• English-speaking
• Resides in the United States

Individuals may not be eligible for the research study if they meet the following exclusion criteria:

• Do not meet all the inclusion criteria above
• Do not have access to a phone
• Are unable to provide informed consent

Interested in participating?

To learn more about the study or inquire about participation, visit the study website through this link or contact the study coordinator Charlotte Irwin by email at charlotte.irwin@chet.rochester.edu