Thank you for your interest in the Autism Community Outreach Project (ACOP) in the US. Before you decide whether to take part, it is important for you to understand why the research is being done and what it will involve. The next two pages explain the purpose of the study and what will happen to the data that you provide. Please take your time to read the following information and if there is anything that is not clear or that you would like to know more about please contact a member of Developmental Neuroscience Lab staff for clarification at 858-534-9752 by phone or dnlab@ucsd.edu by email.

WHAT IS THE PURPOSE OF THE STUDY?
The ACOP is a project undertaken by the Developmental Neuroscience Lab at UCSD. Its goal is to provide a detailed account of what is going on in autism research across the US. This will be done by engaging with a host of different individuals and groups who have a distinctive interest in the future direction of autism research. It is hoped that the project’s findings will help shape decision-making concerning the autism research agenda over the coming decade.
WHY HAVE I BEEN CONTACTED?
So as to ensure engagement with as wide a range of participants as possible, the Developmental Neuroscience Lab invites anybody who feels that they have something to contribute to discussions about the future direction of autism research in the US to participate in the ACOP. We especially wish to get input from autistic adults and parents of autistic children, although everyone is welcome to participate.
DO I HAVE TO TAKE PART?
Taking part in this study is completely voluntary. If you choose to be in the study you can withdraw at any time without adversely affecting your relationship with anyone at the University of California, San Diego. We would be delighted, though, if you would read to the end of the project information before making a decision. Thank you for considering our project.
WHAT WOULD HAPPEN IF I TAKE PART?
Participants will be asked to complete an online survey consisting of non-technical questions on a number of topics relevant to autism research. Surveys can also be completed in paper formats if requested.
WOULD MY TAKING PART IN THE STUDY BE KEPT CONFIDENTIAL?
Your responses will be kept strictly confidential, and digital data will be stored in secure computer files. Any report of this research that is made available to the public will not include your name or any other individual information by which you could be identified.
WHAT HAPPENS TO THE RESULTS OF THE RESEARCH?
Our end goal for this research is to publish it in a peer-review journal. Any report of this research that is made available to the public will not include your name or any other individual information by which you could be identified. If you have questions or want a copy or summary of this study’s results, you can contact the researcher at dnlab@ucsd.edu. If you would prefer to reach out to the UCSD IRB, please contact irb@ucsd.edu.