New Research Study--Make Your Voice Heard!

Dear Parents,

I would like to invite you to participate in an exciting new research study that is being done by researchers at the National Institutes of Health (NIH) and Johns Hopkins University. I hope to hear from you soon!

Why is this study being done?
To learn about how caregivers adjust to having a child with a PDD (Pervasive Developmental Disorder) including Autism, Asperger's Syndrome, Childhood Disintegrative Disorder, Rett's Disorder or Pervasive Developmental Disorder-Not Otherwise Specified.

Who can take part?
Participants must be 18 years of age or older and must be the primary caregiver for a child with one of the following diagnoses: Autism, Asperger's Syndrome, Childhood Disintegrative Disorder, Rett's Disorder or Pervasive Developmental Disorder. Please complete only one survey per household. If your child has been diagnosed with a genetic condition in addition to one of the above diagnoses, you are not eligible to participate.

How do I take part?
The survey can be done online by going to: www.surveymonkey.com/s.aspx?sm=FsPZpA5y ... ryKA_3d_3d and following the instructions on the website. If you would rather complete a paper vers, to receive a copy of the survey and a stamped return envelope by mail. Any contact information you give the researchers so they can send you a survey will be destroyed after it is mailed to you.

What is involved in this study?
Taking a survey that is about 30 minutes long. The survey asks for your thoughts and feelings about the experience of being a caregiver to your child.

What are the risks of the study?
There are no known risks of taking part in this study. If it causes you to become upset or concerned about yourself or your child, please contact your doctor, or your child's primary care doctor.

Are there benefits to taking part in the study?
There are not any personal benefits to you from taking part in this study. We hope to learn more about how caregivers adapt to having a child with a PDD and use that understanding to help other caregivers in the future.

Do I have to take part?
You do not have to be part of this study if you do not want to.

I am very excited to learn more about your experience, and have been amazed by the parents I have met and heard from as a result of this project. This research would not be possible without your help, so thank you so much for your time and interest. I hope that you will take advantage of this chance to make your voice heard! I can’t wait to hear from you!

Thanks again!

Katie