University of Iowa Children's Hospital Autism Research Registry
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Thank you for your interest in the University of Iowa Children’s Hospital Autism Center Research Registry. The purpose of the registry is to collect contact information from individuals with autism spectrum disorders and their families who are willing to be contacted about research studies.  "Autism spectrum disorder" (ASD) includes autism, Asperger's disorder, and Pervasive Developmental Disorder, Not Otherwise Specified (PDD NOS). This registry is for two groups of people: (1) adults with an ASDs enrolling for themselves, or (2) parents or guardians enrolling their children.

The contact information you provide will be used by researchers at the University of Iowa conducting studies of ASDs. When a study is planned that may be appropriate for you or your child, a member of the Research Team might contact you by letter, email, or phone. The team member will explain the study and to see if you and/or your child are interested and eligible to participate. The number and type of study volunteers needed each year varies, so there is no guarantee that you will be contacted or invited into a study. Also, submitting your name to the registry does not obligate you to participate in any study.

We will keep the information you provide confidential. However, federal regulatory agencies and the University of Iowa Institutional Review Board (a committee that reviews and approves research studies) may inspect and copy records pertaining to this research registry.

There are no known risks from being in this registry, and you will not benefit personally.  However we hope that others may benefit in the future from what may be learned as a result of this registry. You will not have any costs for being in the Autism Research Registry and you will not be paid for joining the registry.

Taking part in the registry is completely voluntary. If you join but then decide later that you want your contact information removed, let Dr. Thomas Wassink know using the contact information provided below. You won’t be penalized or lose any benefits for which you otherwise qualify.

If you have any questions about the registry, please contact Thomas Wassink, MD, 4136 MERF, 335-7489.  If you have questions about the rights of research subjects, please contact the Human Subjects Office, 105 Hardin Library for the Health Sciences, 600 Newton Rd, The University of Iowa, Iowa City, IA  52242-1098, (319) 335-6564, or e-mail irb@uiowa.edu. To offer input about your experiences as a research subject or to speak to someone other than the research staff, call the Human Subjects Office at the number above.

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