Research Study for those At Risk

You are invited to participate in a study conducted by researchers at the Johns Hopkins University and the National Human Genome Research Institute. The purpose of our study is to learn more about how people who are at risk for Huntington’s disease are talking about Huntington’s disease to family and close friends and to learn how people are adapting to their risk for Huntington’s disease. By understanding more about this process, we hope that healthcare providers will be able to better serve their patients who are at risk for Huntington’s disease.

The study involves filling out one survey that takes about 30-40 minutes to complete. If you take part in the study, you will be reimbursed with a $5 gift card to Wal-Mart for your time. The survey asks about your communication about Huntington’s disease to family and close friends and also asks about your general thoughts and feelings about yourself and your life.

In order to take part in the study, you must fulfill the following eligibility criteria:

1. You are 18 years or older.
2. You can read and write English.
3. You had a positive predictive genetic test result for Huntington’s disease OR you have a family history of Huntington’s disease and have not had predictive testing.
4. You currently have no symptoms of Huntington’s disease.
5. If you have had predictive genetic testing for Huntington’s disease, you received your results greater than six months ago.

There are two ways to take the survey:

1. Take the survey online at: http://www.surveymonkey.com/s.aspx?sm=3VKcPF_2fB2EabRWv_2fBXfpwg_3d_3d The password to open the survey is “georgehuntington”.
2. OR Fill out the paper copy. If you would prefer to fill out a paper version, please contact Jessica Young at (301) 443-0743 to have a copy of the survey and a stamped return envelope mailed to you. Then send it back to us in a self-addressed stamped envelope, at no cost to you. The survey is anonymous so please do not sign it or include your return address.

If you decide to fill out the paper copy, you will find two versions of the survey. You only need to complete only the survey version that applies to you. Survey A is for people who have had genetic testing for Huntington’s disease. Survey B is for people who have not had genetic testing for Huntington’s disease, but are at risk for Huntington’s disease based on a family history of Huntington’s disease. Please complete only the survey version that applies to you.

If you are willing to take part in this study, please read the consent form (within the survey) and check the box that acknowledges that you have read and agreed to the terms presented in the consent document.

In addition, if you are willing, please feel free to pass on the online survey link and the password to others who might be eligible (see criteria above) and willing to fill out the survey. If the person would prefer to fill out a paper version of the survey, please ask them to contact the researchers (contact information below).

If you have any problems or questions about this study, or about your rights as a participant, please contact the researchers (contact information below). Thank you for your time and for being willing to fill out this survey. We look forward to learning from your answers.

Sincerely,

Jessica Young, BS
Co-investigator
Genetic Counseling Graduate Student
JHU/NHGRI Genetic Counseling Program
(301) 443-0743
Toll-free: (866) 585-7192 (press 4)
youngjes@mail.nih.gov

Barbara Biesecker, MS, CGC
Co-investigator, JHU/NHGRI
Genetic Counseling Training Program
(301) 496-3979
barbarab@mail.nih.gov

Social and Behavioral Research Branch
National Human Genome Research Institute
National Institutes of Health
31 Center Drive (31/B1B36)
Bethesda, MD 20892
Phone: (301) 443-0743
youngjes@mail.nih.gov