International Autism Research Database (ERN_16-1123)

Information Sheet Version 2(15/08/2020)

 

Please read this information carefully before deciding whether you wish to take part in the project.  If you have any further questions please contact Sophie Sowden at S.L.Sowden@bham.ac.uk.  If you have any medical/ other problems which make it difficult for you to read this information, please contact Sophie Sowden for a verbal explanation.

 

When you are happy that you have all of the information you need to be able to decide whether or not you would like to take part in the project, please complete the consent form on the next screen.

 

 

Background

 

We would like to invite you to take part in a research project being conducted by the Birmingham Psychology Autism Research Team (B-PART) at the University of Birmingham. This research, being led by Dr Sophie Sowden, aims to develop an international autism research database, which will help us to keep you informed about the autism research that is happening in several different countries. 

 

Aims of the project

 

We have recently been awarded funding by Universitas 21 (U21), a leading global network of research-intensive universities to set up the U21 Autism Research Network. The aim of this project is to expand our current autism research database to include a more diverse sample of autistic participants from several different countries. We are contacting you because you have previously been recruited by researchers at one of the U21 sites (University of Birmingham, University of Connecticut, University of New South Wales, University of Aukland, Waseda University, McMaster University), and we wanted to ask if you would now like to be part of an international autism research database.

 

 

How will the database work?

If you choose to be part of the database, your nominated U21 site will upload some of your information (e.g. demographics, questionnaire scores etc.) onto a secure online server which will be accessible to listed collaborating U21 researchers. Please note that your contact information will NOT be stored on the server or available to all U21 researchers; instead a nominated researcher from your U21 university who already has your contact details will be listed as the email contact for you. If a U21 researcher from a different site would like you to take part in their study, they will contact your nominated researcher who will then pass the information onto you. If you sign up to the database, we will ask you how often you would like to be contacted about studies from other U21 sites and your nominated researcher will ensure that this is adhered to.

 

 

What will happen if you decide to participate?

If you would like us to, we can add the details that we have for you on local databases to our new international database. If you agree to this: 

1)              Your scores on cognitive assessments, questionnaires, and the structured observation will be shared with a closed group of collaborators. Note that your personal and contact information will not be shared with this group of collaborators. 

2)              We will contact you with information about future online studies from several countries (and not just your current U21 university) to find out whether or not you would like to participate.

 

Who would have access to my details?

Only approved collaborators would have access to your scores on cognitive assessments, questionnaires and observations. We would not share this data with anyone outside the U21 international autism research network. Your personal and contact details will be held on a local database at your U21 site only accessible to the research team at that site.

 

When would I be contacted?

 

You would only be contacted by your nominated U21 researcher when one of the U21 collaborators wishes to recruit participants for an online study of some kind. If you are contacted by someone in our team, you can decide whether you would like to take part in that particular study or not. If you sign up to the database, you are under no obligation to take part in all, or any, of our studies if you do not wish to do so.

Where will the future research take place?

Future research studies will mostly take place online.

 

Where will data be stored?

The data collected will be stored on a secure online server maintained by members of the University of Birmingham.  All information gathered about you will be stored separately from any information that would allow someone to identify who you are (this is known as personal identifying information, e.g. your full names, your address, your contact details).  Your personal identifying and contact information will continue to be stored in the same way as previously, and only members of the research team at your U21 site will have access to it.  We will only be able to trace the information we have collected about you back to you using a special reference number which we will store in a password protected database held at your U21 site. Personal identifying information will be treated as strictly confidential and handled in accordance with the provisions of the Data Protection Act 2018.

 

Will I be paid compensation for my time?

You will be paid for the duration of time you have participated in the study. The hourly rate will be set by the site carrying out the research and you will be informed of this before agreeing to take part. 

 

Confidentiality                 

The confidentiality of participants will be ensured. If published, information on the participant will be presented without reference to their name or any other identifying information.  In the unlikely event of any evidence of abuse being identified, this information will be disclosed by the research workers.

 

Consent

After having read all of the information and having received appropriate responses to any questions that you may have about the study you will be asked to give your consent to participate in the study if you decide that you do wish to participate. We need to receive consent from you in order for you to participate and to be contacted about future research studies you may be interested in taking part in.

 

Withdrawal

Even after consent has been granted, you can request to be withdrawn from the international autism research database and for your research data (e.g. results of cognitive assessments and structured social assessments) to be destroyed. You can request to be withdrawn from the database at any time, without giving a reason. This will not restrict access to other services and will not affect the right to treatment.  However, please be aware that depending on when you decide to remove your information from the database, your research data may have been used in previous studies that have already been published and therefore cannot be withdrawn from that particular study. At no point will we publish any information that may reveal you identity.

 

What will happen to the data afterwards?

The information that you provide will be held on a password protected database. All personal details will be kept separately from the information collected. Participants will be identified by a unique number so that it will only be possible to connect results to individuals via this number. This will ensure that results are kept anonymous.  

 

By taking part in this project you agree to be contacted by your nominated U21 research team with information about future research work from the several different U21 sites. A copy of your personal details will be kept by your nominated U21 site on their existing ‘Autism Research Database’. This database is password protected and only approved members of your nominated U21 research team have access to your details. Your personal details will not be shared with anyone outside your nominated U21 research team.

 

What happens if I decide that I no longer want my details on the International Autism Research Database?

All you would need to do is contact Dr Sophie Sowden at S.L.Sowden@bham.ac.uk.  Your details would be removed from the database immediately.

 

What if there is a problem?

If you have a concern about any aspect of this project, you should ask to speak to the researchers who will do their best to answer your questions. Please contact Dr Sophie Sowden at S.L.Sowden@bham.ac.uk in the first instance. If you remain unhappy and wish to complain formally, you can contact: Professor Ed Wilding; Head of School; School of Psychology, University of Birmingham, Birmingham, B15 2TT, by email: hos.psychology@contacts.bham.ac.uk  or by phone on 0121 414 4931.

 

Review

The study has been approved by the Science, Technology, Engineering and Mathematics Ethical Review Committee.

 

Further information

If you would like any more information about the study please contact Dr Sophie Sowden at S.L.Sowden@bham.ac.uk.