Hello,

My name is Andrea Uscinski and I am a genetic counseling student
trying to increase awareness and support for families with children
who have undiagnosed syndromes. In order to obtain more support I am
conducting a study as part of my Master's thesis which involves an
online survey. Here are the details if anyone is interested.

Thanks!
Andrea

Request for Parental Participation

As a graduate student in the Genetic Counseling Program at Brandeis
University in Waltham, MA, I am conducting a study on parents
experiences with children who have undiagnosed syndromes and the
potential needs that these parents may have.

Participation in the study involves completing a brief online survey
which will ask for details about parents' needs and experiences as a
parent of at least one child who has an undiagnosed syndrome, some
information regarding the child's health, as well as pertinent
demographic information about the parent and child. There is also the
option of participating in a 30 minute tape recorded telephone
interview in which parents will be asked to discuss their experiences
with a child who has an undiagnosed syndrome and the potential needs
for increased support.

Participation in open to any parent of a child with medical,
developmental, and/or behavioral issues. The criteria for parental
participation are:
Any parent 21 years or older with a child who has physical,
mental/intellectual, and/or behavioral issues for which an underlying
basis has not been determined. The child must be undiagnosed for at
least one year.

If you are interested in participating in this study you can access
the survey by clicking on the link or pasting it in your web browser:
http://www.surveymonkey.com/s.asp?u=968211450681

If you have questions about participation, please contact me by phone
(617-501-0270) or email (andrea1@...).

Participation in this study is completely voluntary. Your responses
to both the survey and the interview will be kept confidential. You
may discontinue your participation at any time or choose not to answer
specific questions without consequence. Some questions may touch on
sensitive topics, possible causing feelings of discomfort or distress.
If you experience any such emotions, you may contact me at
617-501-0270 or andrea1@... and be put in touch with a
support person who will be available to talk with you about your concerns.

A summary of the results of the study will be made available to you
through the group from which you heard about the study or directly by
email. The results of this study may be included in a paper submitted
to a published professional journal.

I appreciate your participation and look forward to hearing from you.

Sincerely,
Andrea Uscinski, BA
Genetic Counseling Graduate Student