Dear Parent of a teen in an HD family,

 

Many important research studies are being conducted to find better ways to manage or prevent HD. We would like your teen to consider participating in a study to help us understand how to help teens in families where there are persons with HD. The purpose of this HD Family study is to identify the types and frequency of health concerns teens have about the person with HD, personal health concerns that the teen has about him/herself, and what strategies the teen age family member uses to attempt to resolve these problems.

I, Dr. Janet Williams, am a Registered Nurse who has worked with people with HD and their families, am a Professor of Nursing at The University of Iowa, and am the Principal Investigator of this NIH funded research. Dr. Joan Laing will mail the surveys to family members participating in this study.

In the first part of this study, the research team conducted focus groups with teen age HD family members in several cities in the US and in Canada. We developed a survey from the topics from these focus groups.

We are now in the process of recruiting participants for the survey study. To be eligible to participate, the teen must be

 

1) a teen family member of a person with HD or a family member of a person who has had a positive HD test,

2) be between 14-18 years old, and

3) be able to read English.

 

The surveys ask your teen to provide information about him/herself and the person with HD or a positive HD test, to indicate health concerns about the person with HD, to indicate personal health concerns the teen has about him/herself, and to indicate what strategies he/she uses to try to solve these problems. It may take between 30-60 minutes to complete the survey.

If your teen family members would like to participate in this study, you can receive further information, or receive the survey by contacting Dr. Joan Laing at The University of Iowa. She will ask you how many teens in your family would like to receive a copy of the survey. Each teen who returns the survey will receive either a $25.00 iTunes gift certificate, or a $25.00 Radio Shack gift certificate as a token of our appreciation.

The survey will ask your teen about him/herself, and about the person in your family with HD. It is possible that your teen may experience emotional distress when reading questions on the survey. He/she should feel free to skip any questions that cause distress, or that they do not want to answer. Some of the surveys that your teen will complete ask about his/her outlook of the future and their mood. If our research team is concerned about the health or distress of the survey respondent we will recommend to you and to your teen that your teen seek help to address the concerns. If you or your teen feel at any time that your teen could benefit from treatment or support, you can contact Dr. Williams to be referred to a specialist. Finally, you should understand that we are not prevented from taking steps, including reporting to authorities, to prevent serious harm to your teen. Your teen will not benefit personally from completing the surveys. However we hope that other teens in HD families may benefit in the future from what we learn as a result of this study.

If you have questions about the rights of research subjects, please contact the Human Subjects Office, 300 College of Medicine Administration Building, The University of Iowa, Iowa City, IA 52242, 319-335-6564, or e-mail irb@....
If teens in your family who are 14-18 years old would like to receive a survey, please contact Dr. Joan Laing at 319-353-5414, joan-laing@...; or by returning the response form.

Thank you for considering participating in this opportunity to help families as well as people who have HD.


Janet K. Williams, Ph.D., RN, FAAN
Kelting Professor of Nursing
Director of Postdoctoral Training in Clinical Genetics Research
319-335-7046
338 Nursing Building
The University of Iowa
Iowa City, IA 52242
Email: janet-williams@...

Joan Laing, PhD
Study Coordinator
The University of Iowa
College of Nursing
Iowa City, IA 52242
joan-laing@...