Welcome to the Autism Clinic for Translational Research (ACTr) Register
We are a team of researchers based at the Brain and Mind Research Institute, University of Sydney. Our work is focused on developing a better understanding of and new treatments for Autism Spectrum Disorders (ASD).

Our ultimate goal is to develop practical solutions that improve the lives of families and communities. In order to achieve this goal, we are looking for individuals from the community who have been diagnosed with Autism, Aspergers Syndrome, or PDD-NOS. We need individuals of different ages, genders and backgrounds to participate in each of the various studies we run. These studies may involve diagnostic assessments and investigations into different treatments for Autism Spectrum Disorders, including group and individual therapy, and medications such as Oxytocin.

Please fill in the following survey if you or someone in your family has been diagnosed with an Autism Spectrum Disorder, and you are interested in participating in one of our research studies. When we are conducting a study which you may be eligible for, we will contact you with more information and see whether you would like to participate.

Please start the registration process by clicking the "Let's start!" button. If you have any further questions, please visit our website at http://oxytocin.com.au or email us at med.actr@sydney.edu.au.

Let's start!
 
1. What is your relationship with the individual who has been diagnosed with an Autism Spectrum Disorder (ASD)? *


 
Thank you for your interest in our Autism Spectrum Disorders research. Unfortunately, because the information we collect for our research register is of a personal nature, this survey can only be filled out by the individual with ASD, or their parent/carer/guardian. Feel free to direct them to this page if you think they would be interested, or if you would like to ask us a question about our research please click this link or visit us on our website (http://oxytocin.com.au/) or Facebook page (https://www.facebook.com/AutismClinicForTranslationalResearchACTr/info).

 
You have indicated that you are the parent/carer/guardian of someone diagnosed with an Autism Spectrum Disorder. Please read the following information about our survey and research register. If you are less than 16 years of age, your parent/carer/guardian must read this information, give their consent for you to be on the register, and fill out our survey on your behalf.

(1) What is the Autism Clinic for Translational Research (ACTr) Research Register about?
The ACTr is a research clinic within the Brain and Mind Research Institute at the University of Sydney. The ACTr Research Register is a database of patients who have consented to being contacted by researchers who may ask them to be involved in future research. You can change your decision for your child to be included, or not to be included, at any time. The research your child may be asked to participate in will be of different types including questionnaires, interviews, sleep studies, brain scans, therapy sessions and trials of medications. If you decide to be on the ACTr Research Register their name will remain on the register until you ask for it to be removed and you will be contacted a maximum of 4 times per year by telephone or email only. Your child does not have to participate in any of the research you are contacted about. The Research Register allows our researchers to find people who are interested in participating in their research studies and to work out which types of studies would suit each person.

(2) Who is involved in the ACTr Research Register?
The ACTr Research Register is kept by a small team of researchers in the Autism Clinic for Translational Research (ACTr), which is part of the Brain and Mind Research Institute at the University of Sydney. The register is completely confidential. The name of the person in charge of the register is Lisa Whittle (9114 4104). If you wanted to contact a researcher for further information, you could contact Lisa on the above telephone number.

(3) What does the ACTr Research Register involve?
If you agree to your child being included in our Research Register, you simply need to fill out the survey on the following pages. The survey includes questions about contact details, living arrangements, medical and psychiatric history and research interests. Many of the questions are of a personal nature and relate to their diagnosis of an Autism Spectrum Disorder, their mental and physical health or previous treatment they have undertaken. You do not have to do anything after you have filled out the survey. Their name, your contact details, and the other information you provide in the survey will be placed into a secure computer database and only given to researchers working within the Brain and Mind Research Institute. When they are conducting a study they think you may be suitable for, these researchers will then contact you to ask if your child would like to participate in their research. These researchers will explain what their research involves at that time and your child does not have to participate in any research you are contacted about. Please attempt to provide the most accurate answers for all of the questions in the survey because they will help us to work out which research study best suits your child. Keep in mind that all of your answers will be kept strictly confidential, except where it is required for by law for us to disclose them.

(4) How much time will the ACTr Research Register take?
Completion of the questions in this survey will take approximately 3 minutes. After you have completed the survey, we may contact you and offer your child the opportunity to participate in one of our research studies. If you agree, it will be explained to you at the time what this would involve.
 
More information about getting involved:

(5) Can I withdraw from the ACTr Research Register?
Participating in the ACTr Research Register is completely voluntary - you are not under any obligation to give consent for your child to participate. If you decide not to consent, this will not affect you or your child’s relationship with our clinic or the University of Sydney. If you do decide to consent for your child to take part in the ACTr Research Register, their details will remain in our database on an ongoing basis, unless you contact us to withdraw from the register. You can withdraw your child from the register at any time and for any reason by contacting Lisa Whittle (9114 4104). If you do decide to withdraw, this will not affect your or your child’s relationship with our clinic or The University of Sydney.

(6) Who will have access to my information?
The information you provide will be kept strictly confidential and only the researchers involved will have access to it, except as required by law.

(7) Will the ACTr Research Register benefit me?
If your child is eligible for one of the research studies we are conducting, we will contact you and offer you the opportunity to allow them to participate in that study. Participation in the study may involve treatment or diagnostic assessments for Autism Spectrum Disorders. Furthermore, if they do participate in one of our future studies they will be contributing to knowledge about the diagnosis, treatment and management of Autism Spectrum Disorders which may be of benefit to them, you and the community. However, filling out this survey and becoming part of the register does not guarantee that they will be able to participate in one of our research studies. This depends on the specific criteria for participating in those studies, which vary from study to study. Therefore we cannot guarantee that you or your child will benefit from participating in the register.

(8) Can I tell other people about the ACTr Research Register?
You are welcome to tell other people about the ACTr Research Register.

(9) What if I require further information about the study or my involvement in it?
If you are experiencing difficulty with filling out the survey, you do not understand the questions, or you want to know more about why we are collecting this information, please contact Associate Professor Adam Guastella (adam.guastella@sydney.edu.au or 9351 0539), Lisa Whittle (lisa.whittle@sydney.edu.au or 9114 4104), or Anita van Zwieten (anita.vanzwieten@sydney.edu.au or 9351 0808) at the University of Sydney.

(10) What if I have a complaint or any concerns?
Any person with concerns or complaints about the conduct of a research study can contact The Manager, Human Ethics Administration, University of Sydney on +61 2 8627 8176 (Telephone); +61 2 8627 8177 (Facsimile) or ro.humanethics@sydney.edu.au (Email).
 
Consent Page: *

Please indicate below whether you give your consent for your child to participate in our ACTr Research Register. This involves you filling out the survey on the following pages, this information being stored on our research register, and you agreeing to be contacted by us should a study arise that your child might be suitable for. If you are less than 16 years of age, your parent/guardian/carer needs to fill in this consent page in order for you to participate in our research register.

In giving your consent you acknowledge that:

1. The procedures required for the project and the time involved have been explained to you, and any questions you have about the project have been answered to your satisfaction.


2. You have read the Information Statement and have been given the opportunity to discuss the information and your child’s involvement in the project with the researcher/s.


3. You understand that participation in this study is completely voluntary – you and your child are not under any obligation to consent.


4. You understand that involvement in this study and the information you provide is strictly confidential, except where we are required to disclose it by law.


5. You understand that you can withdraw your child from the study at any time, without affecting your or their relationship with the researcher(s) or the University of Sydney now or in the future.
     
 
Online Survey Questions for Parent/Carer/Guardian:

You have indicated that you are the parent/carer/guardian of someone diagnosed with an Autism Spectrum Disorder (ASD). Please answer the following questions as honestly and accurately as you can. If you have a query or concern about the questions in this survey, please contact Clinical Trials Coordinator Lisa Whittle on (02) 9114 4104 or lisa.whittle@sydney.edu.au.
 
Contact Details:

Please fill out the following information:
 
First name: *

 
Last name: *

 
Address Line 1: *

 
Suburb: *

 
ZIP/Postal Code: *

 
Phone number: *

 
How would you like us to contact you? *


 
Demographic Information:

These questions are about the individual diagnosed with ASD.
 
What is the name of the individual diagnosed with ASD? *

 
What is the date of birth of the individual diagnosed with ASD? *

 
What is the gender of the individual diagnosed with ASD? *


 
Diagnosis of ASD:

These questions are about when the individual was diagnosed with an Autism Spectrum Disorder (ASD).
 
Which Autism Spectrum Disorder has the individual been diagnosed with? *


 
Research Interests:

These questions are about the previous research experiences and research interests of the individual with ASD.
 
How did you find out about our research? *


 
We carry out many different types of research studies. Which of the following types of studies would the individual with ASD be willing to participate in? Please check all that apply. *


 
Is there anything you would like to ask us?

 
Would you like to receive a quarterly email newsletter from our clinic? Your decision about this newsletter will not affect your ability to participate in our research studies.

     
 
You have indicated that you are the individual diagnosed with an Autism Spectrum Disorder (ASD). If you are not over 16 years of age, please return to the home page and obtain the consent of your parent/guardian/carer to participate in our survey and research register. Please answer the following questions as honestly and accurately as you can. If you have a query or concern about the questions in this survey, please contact Clinical Trials Coordinator Lisa Whittle on (02) 9114 4104 or lisa.whittle@sydney.edu.au.

 
Consent Form: *

You have indicated that you are 16 years of age or older. Please indicate below whether you give your consent to participating in our ACTr Research Register. This involves filling out the survey on the following pages, your information being stored on our research register, and agreeing to be contacted by us should a study arise that you might be suitable for.
In giving your consent you acknowledge that:

1. The procedures required for the project and the time involved have been explained to you, and any questions you have about the project have been answered to your satisfaction.

2. You have read the Information Statement and have been given the opportunity to discuss the information and your involvement in the project with the researcher/s.

3. You understand that being in this study is completely voluntary – you are not under any obligation to consent.

4. You understand that your involvement in this study and your information is strictly confidential, except where we are required to disclose it by law.

5. You understand that you can withdraw from the study at any time, without affecting your relationship with the researcher(s) or the University of Sydney now or in the future.
     
 
Contact Details:

Please fill out the following information:
 
First Name: *

 
Last Name: *

 
Address Line 1: *

 
Suburb: *

 
ZIP/Postal Code: *

 
Phone number: *

 
Demographic Information:

These questions are about the individual diagnosed with ASD.
 
What is the date of birth of the individual diagnosed with ASD? *

 
What is the gender of the individual diagnosed with ASD? *


 
Diagnosis of ASD:

These questions are about when the individual was diagnosed with an Autism Spectrum Disorder (ASD).
 
Which Autism Spectrum Disorder have you been diagnosed with? *


 
Research Interests:

These questions are about the previous research experiences and research interests of the individual with ASD.
 
How did you find out about our research? *


 
We carry out many different types of research studies. Which of the following types of studies would you be willing to participate in? Please check all that apply.


 
Would you like to receive a quarterly email newsletter from our clinic? Your decision about this newsletter will not affect your ability to participate in our research studies.

     
Thank you {{answer_6002950}} {{answer_6003905}} for joining the Autism Clinic for Translational Research (ACTr) Register.

We appreciate your time, and we will contact you shortly when there is research available that interests you. You will receive an email shortly confirming your registration.

If you have any questions, please contact us at med.actr@sydney.edu.au or 02 9114 4104.
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