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National Down Syndrome Parent Survey

Posted Jan 27 2009 6:28pm

Dear Parents and Caregivers,

You are invited to participate in a study conducted by researchers at the National Institutes of Health and the Johns Hopkins University.

*Why is this study being done?*
To learn more about how caregivers adjust to having a child with Down syndrome (DS). We are interested in hearing from caregivers who may be learning to adjust and also from caregivers who feel well-adjusted.

*Who can take part in this study?*
You must be 18 years of age or older and must be the primary caregiver for a child with DS. Please fill out only one survey per household.

*What is involved in this study?*
There is one survey that takes approximately 20-30 minutes to complete. It asks about your thoughts and feelings about your experience as a caregiver to your child.

*What are the risks of the study?*
There are no known risks of taking part in this study. If taking the survey makes you feel upset, you can stop taking the survey at any time. If it causes you to become upset or worried about yourself or your child, you can also contact the researchers (see below) and they will help direct you to the appropriate resources.

*Are there benefits to taking part in the study?*
You will not personally receive any benefits from taking part in this study. We hope to learn more about how caregivers adjust to having a child with DS and pass that understanding on to help caregivers in the future.

*Do I have to participate?*
No, you do not have to take part in this study if you do not want to. Your decision to take the survey will not have an affect on your child’s healthcare. If you begin the survey, you can choose to skip any question that you don’t want to answer. You can also stop taking the survey at any time. If you finish the survey and then change your mind, we will not be able to delete it since the surveys are all anonymous.

*Who else will know that I am in the study?*
We do not ask for your name or contact information on this survey. If you provide us with your name by calling or writing to us, we will not link your name with your responses. This study will not be part of any medical record. When we report our research results, it will be done with no identifiable information from individual participants.

*How do I participate?*
The survey can be found online here. If you prefer to complete a paper version of the survey, please contact Megan Truitt at (301) 443-2595 or through email to receive the survey and a pre-addressed and stamped return envelope. Any contact information you give to the researchers in order to mail the survey will be immediately destroyed after it is mailed. Also, if you are more comfortable completing the survey over the phone, please contact Megan Truitt (see contact information below) to arrange a time to do so.

Thank you for your interest and time! If you are taking this survey online, please print a copy of this consent form so that you have the researchers’ contact information.

Also, after the study is complete, we plan on giving out a short summary of the results through the recruitment sources as a way of saying thanks for participating. If interested, please check the Kennedy Krieger Institute website for the study summary.

Megan Truitt
Associate Investigator, JHU/NHGRI Genetic Counseling Training Program
(301) 443-2595

Barbara Biesecker
Primary Investigator, JHU/NHGRI Genetic Counseling Training Program
(301) 496-3979

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