Huntington’s Disease: The role of genetic counselors in the lives of those at risk

Study conducted by: Masters in Genetic Counseling at the University of Maryland, Baltimore

Participant requirements: Must be over the age of 18 years and have a parent who is affected by Huntington’s Disease. You DO NOT have to have seen a genetic counselor to participate in this study


Study Description:

This study will be looking at how children of parents with Huntington’s Disease first found out about the disease and their own family history of it. A lot of times, when the offspring of those who have HD are first told about the disease, how it is passed on, and what it means for them in their own lives, they do not fully understand all of the information. Parents who are telling their children this information may not know how to tell their offspring the news and may have trouble communicating the facts. The main goal of the study is to see if having a genetic counselor present when parents first tell their children of the diagnosis has an effect on how much information the children are given and how they cope with the information. The study will also look at how the relationship between the parent and the child changes after the child is told about the disease in their family, and how genetic counselors may be able to help the parent-child relationship remain as it is.


Interested in participating?

The study will be done through a survey that will ask a series of questions that look into the goals written above. The survey will have up to 27 questions based on answers to certain sections and should take participants no more then 30 minutes to complete. The survey will be completely anonymous and no identifying information will be collected. If you are interested in participating the link to the survey is provided below