Dear ASDC Families,
My name is Lorin Porth and I am a student in the Masters in Genetic Counseling program at the University of Maryland School of Medicine. I am conducting a new research study to better understand parents’ decisions about genetic testing for their child who is deaf or hard of hearing.
Who can participate?
Parents who have a child (under age 18) who is deaf or hard of hearing and have had a conversation with a healthcare provider about genetic testing about their hearing can take part in the study.
What’s involved?
Participation consists of an online survey that should take about 20 minutes to complete. We will ask questions about your views on genetic testing, what influenced your decision about genetic testing for your child, and general information about you.
Is the survey anonymous?
Yes, this is an anonymous study and your child’s doctors will not know if you choose to participate. Participation in the study is voluntary, and your decision to participate will not affect your child’s medical care.
What is the deadline?
The last day to complete the survey is Saturday, October 31, 2020.
How do I take the survey?
Go to the survey page, scroll to the bottom of the page, and click the red arrow to start your survey.
Thank you for your consideration. We hope to find ways that genetic counselors can better serve families by understanding how parents and caregivers perceive and feel about genetic testing for their deaf or hard of hearing children.
Sincerely,
Lorin Porth, BS
Masters in Genetic Counseling student
University of Maryland School of Medicine
lorin.porth@som.umaryland.edu
Shannan Dixon, MS, CGC
Director, Master’s in Genetic Counseling Program
University of Maryland School of Medicine
sdelany@som.umaryland.edu
