I am sending this to the HD on-line groups for Dr. Janet Williams and Elizabeth
Penzinger with the University of Iowa HDSA Center of Excellence. It's an
invitation for young adults, ages 14 to 18, to participate in the HD Family
Study! If you, or your teenager, would like to contribute to this important
study, please contact Dr. Joan Laing [see contact below] to request a survey.
If you have more then one teenager living at home, request individual surveys
for each person.

I've copied and pasted it below and am also attaching it. This is a fantastic
opportunity for our young people in HD families to contribute to an important
study! Please share this request with your support groups and chapters.

Thank you!
Jean
=========================================================


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@...

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