Factors that Influence Parents
Toward Early Diagnosis of Autism Spectrum Disorder

LETTER OF INFORMATION AND CONSENT TO PARTICIPATE IN RESEARCH

Title of Study: Factors that Influence Parents Toward Early Diagnosis of Autism Spectrum Disorder (ASD)

You are asked to participate in a study by Debra Barrie, B.A. Honours, from the Psychology Department at the University of Windsor as part of her Master’s degree in Child Clinical Psychology.

Dr. Marcia Gragg, Ph.D., C. Psych., is supervising the study. If you have any questions or concerns, please feel free to contact Dr. Gragg at 253-3000, ext. 2227.

PURPOSE OF THE STUDY
The study will look at what helps parents get an early diagnosis of ASD for their children. I would like to know about your first concerns about your child’s development, what you did to get professional help and what helped you obtain a diagnosis.

PROCEDURES
If you volunteer to participate in the study, you will be asked to:
POTENTIAL RISKS
You might feel mildly uncomfortable, anxious, or upset answering the questions as you recall the experiences you had obtaining a diagnosis for your child. You can access professional help by dialling the telephone code 211 or accessing the web address for 211Ontario http://www.211ontario.ca should you require help with psycho-emotional factors as a result of participating in the research.

POTENTIAL BENEFITS TO PARTICIPANTS AND/OR TO SOCIETY

You will not directly benefit from taking part in the study. You will be giving us important information that might help us help future parents and children with ASD get early diagnoses. It is our goal that this research will be published in a scientific journal.

PAYMENT FOR PARTICIPATION
To thank you for participating in this study we offer you the opportunity to enter a draw for a $50 gift card. You will have the option of choosing a gift card to Tim Horton’s, Toys R Us, or Chapters. If you are the winner of the gift card it will be mailed to the address you provide on the Draw Form by June 1, 2011.

CONFIDENTIALITY

Any information gathered in connection with this study and that can identify you will remain confidential and will be disclosed only with your permission. Your names will not appear in any reports of this study. Any forms or paperwork containing your name or your child’s name will be kept in a secure place separate from the questionnaire data. Diagnostic Reports will be shredded immediately after the diagnostic details have been verified. The researchers will keep the data from this study locked in a secure location for seven years after the study is completed. All data and forms will be shredded or deleted after seven years.

We may wish to use your information from this study in future research studies. Your information will still be confidential and identified only by an Identification number.

PARTICIPATION AND WITHDRAWAL
You can choose whether to be in this study or not. If you volunteer to be in this study, you may withdraw at any time before you submit your questionnaire on-line without consequences of any kind. You may also refuse to answer any questions you do not want to answer and remain in the study. Once you have submitted your questionnaire, you will no longer be able to withdraw your information as there is no way to identify and locate your specific questionnaire.

If you do not wish to take part in the study once you have started, simply exit the questionnaire. You will be sent directly to the Draw page and you can enter the Draw even if you choose to withdraw from the study. If you would like to participate, complete the questionnaire and submit it. You will be sent directly to the Draw page after you have clicked submit.

FEEDBACK OF THE RESULTS OF THIS STUDY TO THE PARTICIPANTS

A brief summary of the results of the research will be available by June 30, 2011 and will be posted on-line at http://www.uwindsor.ca/autism

RIGHTS OF RESEARCH PARTICIPANTS
You may withdraw your consent at any time and discontinue participation without penalty. If you have questions regarding your rights as a research participant, contact: Research Ethics Coordinator, University of Windsor, Windsor, Ontario N9B 3P4, (519-253-3000, Ext. 3948), email: ethics@uwindsor.ca

SIGNATURE OF RESEARCH PARTICIPANT

I understand the information provided for the study Factors that Influence Parents Toward Early Diagnosis of Autism Spectrum Disorder as described herein. My questions have been answered to my satisfaction, and I agree to participate in this study.

SIGNATURE OF INVESTIGATOR
These are the terms under which I will conduct research.


Signature of Investigator



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