Hello,

My name is Morgan Thomas and I am a second year graduate student in the University of Maryland School of Medicine Masters of Genetic Counseling Program. I am inviting you to take part in my graduate research. The purpose of the study is to learn about the factors that influence how parents in fragile X premutation carrier families communicate genetic carrier testing results to their children who do not have fragile X syndrome.

There are no risks to taking part in this research. You will not benefit directly from participating in this study, but knowledge gained will hopefully be used to help develop resources for parents and practice guidelines for professionals regarding disclosing genetic testing results to children.

Parents in fragile X premutation carrier families who have at least one child who is unaffected with fragile X are eligible to take part.  Participation in this study involves an anonymous online survey that should take about 10-15 minutes to complete. Participation in this survey is voluntary and you can stop taking the survey at any time. This study has been reviewed and received ethics clearance through the University of Maryland, Baltimore Institutional Review Board.

If you have any questions or concerns about the study, please contact Shannan Dixon, principal investigator and director of the Masters of Genetic Counseling Program at University of Maryland School of Medicine, at SDelany@som.umaryland.edu or 410-706-4713. If you have any questions about participants’ rights as they relate to this research, please contact the Human Rights Protection Office (HRPO) for the University of Maryland at 410-706-5037 or hrpo@umaryland.edu.

If you are interested in participating, please use the following link to access the survey. I greatly appreciate your time and consideration in participating in my research.

https://www.surveymonkey.com/r/8F8GFL6

Sincerely,

Morgan Thomas, BS

Masters of Genetic Counseling Candidate

 

Shannan Dixon, MGC, CGC, principal investigator

Program Director, University of Maryland Masters of Genetic Counseling Program

sdelany@som.umaryland.edu