Dear Potential Participant:

You are invited to participate in a graduate research study focusing on parents’ dreams and goals for their 18-29 year old children with Down syndrome. I am a graduate student in the genetic counseling program at the University of South Carolina School of Medicine, and I am carrying out this study in order to learn what these dreams are and what resources are needed to achieve them.

This research involves a survey, which can be completed either in written form or online. All survey answers will be kept confidential. If you do not wish to answer a certain question, you may skip that question and continue with the survey.

We are also conducting an *optional* phone interview at a later date. In this interview, we will talk about your survey responses in greater depth. If you wish to participate in this interview, please include your first name and phone number at the end of the survey so that we may contact you. In order to determine which survey was yours, your survey responses and this phone interview will be linked together. However, your contact information will not be used for any other purposes. The results of this study might be published or presented at academic meetings; however, participants will not be identified and personal information will remain confidential.

Your participation in this research is voluntary. By completing the survey, you are consenting that you have read and understand this information. At any time, you may withdraw from the study by not completing the survey.

Thank you for your time and consideration to participate in this survey. Your responses may help genetic counselors and other advocates provide more useful resources and recommendations for families with a child who has Down syndrome. If you have any questions regarding this research, you may contact either myself or my faculty advisor, Victoria Vincent, MS, CGC, using the contact information below. If you have any questions about your rights as a research participant, you may contact the Office of Research Compliance at the University of South Carolina at (803)777-7095.

Sincerely,

Julianna Hudnall Baker, B.S.
Genetic Counselor Candidate
University of South Carolina School of Medicine
USC Genetic Counseling Program
Two Medical Park, Suite 208
Columbia, SC 29203
Julianna.Hudnall@uscmed.sc.edu
(903)388-3960

Victoria Vincent, MS, CGC
Faculty Advisor
University of South Carolina School of Medicine
USC Genetic Counseling Program
Two Medical Park, Suite 208
Columbia, SC 29203 Victoria.Vincent@uscmed.sc.edu
(803)545-5775



Demographic Information

* 1. What is your age?

* 2. What is your gender?

* 3. What is the highest level of school you have completed or the highest degree you have received?

* 4. What is your average household income?

* 5. What is your ethnicity?

* 6. What is your current marital status?

* 7. Is your child with Down syndrome between the ages of 18 and 30?

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