Help with our autism research

We are a research group based in the Division of Psychological Medicine and Clinical Neurosciences in Cardiff University’s School of Medicine, working with the National Centre for Mental Health (NCMH) to understand more about Autism Spectrum Disorder (ASD).

Principal Investigator: Dr Jack Underwood

Supervisory Investigator: Professor Jeremy Hall

This survey is hosted by the NCMH which is a Welsh Government funded Research Centre, led by Cardiff, Swansea and Bangor Universities. It is being funded by Health and Care Research Wales, Welsh Government.

The Director of the National Centre for Mental Health is Professor Ian Jones.

You may be asked to be in this study because you have reported to NCMH that you have been diagnosed with Autism Spectrum Disorder, Autism or Asperger’s Syndrome, or you may be asked to be a control for our study.

Your participation is voluntary which means you can decide if you want to participate or not.

The research team is going to tell you about the study and give you this form to read. You may want to talk to your family, friends, or your family doctor about the study.

Please ask the investigator and/or the study team about anything you do not understand.

If you decide to participate, you will be asked to sign an ‘informed consent’ form.

.We would like to learn more about why people with autism are more likely to have mental health problems, and if there are any underlying genetic links.

We want to know whether the genes that are linked to an increased risk of depression, bipolar disorder and schizophrenia in the general population are also linked to an increased risk of those conditions in autistic people.

We also want to know whether autistic people’s lifetime experiences affect their risk of mental health conditions in the same way as the rest of the population.

We do this by comparing people’s experiences to their genetics, which you might have provided to NCMH when you signed up as a saliva swab or blood sample

We would like to ensure that anyone considering participating in this study can make an informed decision on whether to participate or not, therefore we ask that you take the time to read and understand the information provided.

If you have any questions please contact Dr Jack Underwood (underwoodj4@cardiff.ac.uk)

Once you have agreed to take part, you will be asked to complete some questionnaires online (if you prefer we can send you a pack of questionnaires in the post or via e-mail).

These questionnaires include a summary of the information you have provided to NCMH, to check it is still correct, and some assessments about autism, headaches, depression and anxiety

If you’re not completing online you then send the questionnaires back to the team using the envelope or email address provided.

What happens then?

We may need to contact you after receiving your questionnaires to clarify some information we have gathered. We will then make minimal contact with you to let you know where we are with the research and the outcomes.

We would also like to let you know about other research opportunities. If you are selected for the second part of the study we will contact you again to check you are happy to take part and explain the process.

If it is just you completing the questionnaires, it will take approximately 5-15 minutes. 

You are free to withdraw from the study at any time without giving a reason.

Details of your initial consent and the withdrawal process will be maintained.

We will retain your data for future use (within the confines of your informed consent), but you will not be contacted by our researchers again.

Cardiff University is the sponsor of this study.

We will be using your information in order to conduct this research and Cardiff University will act as the data controller for this research. This means that we are responsible for looking after your information and using it properly.

The information you provide will be analysed within a larger group of information given by other NCMH participants. These results will get published in scientific journals to inform the scientific community which will then inform clinicians and the wider public. Your personal details will never be published.

Your rights to access, change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate.

If you withdraw from the study, we will keep your anonymised data that we have already used for analysis (e.g. we will keep scientific findings that we have obtained from your DNA sample).

It is usually not possible to promise any direct benefits of taking part in research. You are not expected to receive any benefits from being in this research study. However, your participation will help us learn more about how the brain changes over time and possible genetic influences.

Participating in a research study involves risks, though we do everything we can to avoid risks.

Risk to confidentiality

There is a risk that there will be a breach in confidentiality. This means that others may know your personal health information without your permission. Although this risk cannot be completely eliminated, we make every effort to protect your study information. Please read: ‘How is the information I give you kept confidential?’ below.

Psychological risk

You may feel uncomfortable talking about personal information during the interview or while filling out questionnaires.  You can refuse to answer questions and remain in the study. You may become tired during the interview or computerized activities. You can ask for a break during any activity. If you do become concerned, you can talk to our team and we will provide you with details of how to get support.

Other risks

There may be some risks associated with this study that we do not yet know about. If you feel that you have experienced a risk that we have not told you about, please tell a study staff member.

We do not anticipate that anything will go wrong. But if you have a concern about any aspect of this project please contact Dr Jack Underwood who is the Primary Investigator and will be happy to help with your concerns (underwoodj4@Cardiff.ac.uk).

If you remain unhappy and wish to complain formally, you can do this by contacting our Research Governance team (resgov.ac.uk)

In the unlikely event that something does go wrong and you are harmed during the research due to someone’s negligence, then you may have grounds for legal action for compensation against Cardiff University. You will be required to cover your legal costs.

Keeping your information secure is our highest priority. There are a number of regulations and policies that the study complies with to ensure data is protected and biological samples are stored correctly.

Storage of personal and biological data will always be in accordance with current ethical guidelines, Cardiff University guidance and policies and the conditions of the informed consent you provide.

For more information regarding Cardiff University’s guidance and policies can be found here:

Data protection for Research Participants:

• Research Participants Data Protection Notice
• Data Protection Policy
• Research Integrity and Governance

This project has received ethical approval from the Cardiff University School of Medicine Research Ethics Committee