Introduction and Information

Introduction

I would like to invite you to take part in a research project. Before you decide, you need to understand why the research is being done and what it will involve for you. Please take the time to read the following information carefully and ask questions about anything you do not understand. Talk to others about the study if you wish.

What is the purpose of the study?

This study is investigating the sex differences in traits of Autistic Spectrum Disorders. Previous studies have indicated that males and females express these traits differently and this has historically led to women being left without support growing up due to not receiving early diagnoses or getting misdiagnosed with the wrong disorders.

Why have I been invited to take part in this study?

You have been invited to take part in this study because you are over the age of 18 and live in the UK. You must be over 18 years of age to take part in this study.

Do I have to take part?

No, you do not have to participate. There will be no adverse consequences in terms of your legal rights and your care / treatment / employment status / education.

There will also be no impact on your assessment or class of degree if you decide not to participate or withdraw at a later stage. You can withdraw without giving a reason.

You can withdraw your participation at any time. You can request for your data to be withdrawn until 16/04/ without giving a reason and without prejudice. If you withdraw from the study, all your data will be destroyed. Please contact the Principal Investigator using the email address provided at the end of this document.

What will I do in the study?

If you agree to take part, we will then ask you to sign a consent form.  Your participation will take about 15 minutes. In this time, you will be asked to complete the Autism Quotient (AQ50). This is a self-questionnaire containing 50 statements that you will rate on the extent that you can relate to them.

What will happen to data I provide?

Personal data will be handled in accordance with the General Data Protection Regulations (GDPR) 2018 and the UK Data Protection Act 2018 (DPA).  Data protection legislation requires the University to have a valid legal reason to process and use personal data about you. This is often called a ‘legal basis’. In the context of research, the lawful basis upon which your personal information will be processed is usually where “Processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller” (Article 6 of GDPR). The standard University Privacy Policy Statement can be found at https://www.northampton.ac.uk/about-us/privacy-policy/

All data will be deleted after this project has been marked, in July 2022.

Anonymised/pseudonymised data we collect from you will be stored securely for 2 years for publications and/or conference presentations. Identifiable personal data (your name) will be destroyed immediately following graduation (July 2022).

What will happen to the results of this study?

The results of this study will be included in a scientific report I am required to write to complete my degree. The data will be presented in numbers, tables, and graphs, so that individual answers cannot be identified. The report will be uploaded to the University’s web page, but only students and academics at the University will be able to read it. Some of the results of this study may also be published in an academic journal article however your personal information used in research will be pseudonymised before sharing more widely or publishing the research outcomes.

What are the risks and benefits of taking part?

There are no direct risks of taking part in this research project. The benefit is that you will have the opportunity to potentially influence the understanding of Autistic Spectrum Disorders in a positive way.

Will my taking part in the study be kept confidential?

Yes. Your details will be held in complete confidence and we will follow ethical and legal practice in relation to all study procedures. Personal data (your name) will be handled in accordance with the General Data Protection Regulations, (GDPR), 2018 so that unauthorised individuals will not have access to them. Your data will be pseudonymised and I will not use your name or any other details that could identify you or other people. Data held electronically would be kept in encrypted or password protected folders and devices to minimise any risk, and to prevent unauthorised access or accidental loss. The University policy requires all research data to be securely stored on University cloud servers. Personal data would always be stored in an encrypted separate folder to research data.

The Principal Investigator (Chantel Samson) will be in charge of keeping, processing, and deleting your data. The Supervisor of this research project, Psychology teaching staff and perhaps an external examiner will have access to the data,  but will not keep copies of personal data.

In certain exceptional circumstances where you or others may be at significant risk of harm, the researcher may need to report this to an appropriate authority, in accordance with the General Data Protection Regulations, (GDPR) 2018. This would usually be discussed with you first.

What if there is a question or a problem?

If you have any questions, concerns, or complaints about your participation in this study, please contact the principal investigator, Chantel Samson, using: chantelmonique4@gmail.com

You may also contact the principal investigator’s supervisor, Graham Smith, using: Graham.Smith@northampton.ac.uk

Division of Psychology, Faculty of Health, Education, and Society, University of Northampton, Waterside Campus, Learning Hub, room 301, Northampton, Northamptonshire, NN1 5PA.

Who has reviewed the project?

This study has received approval from the Psychology Ethics Committee at the University of Northampton.

Thank you for taking the time to read this Information Sheet.