Seeking Parents of Children with Neuromuscular Diseases...

...for Survey of Genetic Counseling Experiences and Genetic Knowledge


Dear Parent,

I would like to invite you to participate in a research study that is being conducted at the University of Maryland, Baltimore. The goal of the study is to gain a better understanding of what parents of children with neuromuscular disorders know about the genetic basis of their child’s condition, as well as how and when this information was provided and/or obtained within the diagnostic and management process. Results of the study will help the investigators find the best way to educate parents of children with neuromuscular disorders about the genetic basis of their child’s condition.

I am asking you to participate in this study because you are the parent of a child with a neuromuscular disorder. Your participation in the study will involve completion of an online survey. Please note that your participation in this study is voluntary and completely anonymous, as no identifying information will be requested. The risk for breach of confidentiality is very small because the investigators will not be able to trace your responses back to you. Also, please note that it is possible you may be upset by some of the questions regarding your child’s diagnosis. Feel free to skip any question that you do not feel comfortable answering.

If you would like to participate, please take a few moments to complete the survey; it is expected that the survey will take about 10-15 minutes to complete. Once you are finished, nothing more will be asked of you. Your participation is greatly appreciated. If you have any questions or concerns, feel free to contact me at jfran007@umaryland.edu. Thank you for your time.

Sincerely,

Jacquelyn Francis, B.S.
Master’s in Genetic Counseling Program Candidate
University of Maryland, Baltimore

The survey is available online at http://www.surveymonkey.com/s.aspx?sm=px33yKo77QFithmcfY1sag_3d_3d.