Newcastle University

This project is being run by a research team at Newcastle University with the help of your local child development team. The research team includes a child clinical psychologist, a paediatrician specialising in autism and development and a research associate with a health visiting background; all are specialists in autism spectrum disorder. The project is funded by the UK charity Autistica (www.autistica.org.uk). Autistica is committed to ensuring that increased understanding and new scientific knowledge will improve the lives of individuals with ASD and their families.

·To help researchers recruit to studies of children with ASD.

· To allow families to take part in research that aims to answer important questions which may lead to significant advances in the care and treatment of children with ASD

· To collect data about your child and family, and allow us to answer some important questions about ASD

Paediatricians from all across the UK have agreed to discuss the ASD-UK project with all parents/carers of children recently diagnosed with ASD and give families the opportunity to be included on the database.

The data that we are able to collect from families participating in ASD-UK will be used by us to answer some important research questions. ASD-UK will also support research studies by other medical researchers in the future. Together, these studies aim to bring about improvements in the quality of life for individuals with ASD and their families in the future. By taking part, you will help with research that might result in improvements for your child now, or improvements for other children with ASD in the future. Any information that is published will be anonymised.

Your paediatrician or another member of the child development team will have discussed the project with you and given you this information to read, together with a form to complete and return to us in the stamped addressed envelope.

If you would like to know more about the project, you should complete the Contact form and send it back to us (unless the person discussing the project with you has already done this for you). We can not contact you without this form. After we receive the form, we will contact you by phone, within 2-4 weeks and discuss the project with you further and seek your written permission to join.

Your decision to include your child’s details on ASD-UK is entirely voluntary. The services you and your child receive will not be affected in any way by not being included on the database. Where parents do not consent, we have permission from the Ethical Committee to keep a small amount of data which you or your paediatrician will provide. The data will include the child’s year of birth, gender, local authority, diagnosis and postcode. The postcode will be used so we can look at differences between families who do and do not take part. Once we have recorded the information we need, the last 2 digits of the postcode will be destroyed (this is the part that can identify where you live). If you do not wish to be contacted by us, you or the member of the Child Development Team who has discussed the project with you should complete the reverse of the contact form; ‘we would prefer not to be contacted’ and return it to us in the stamped addressed envelope.

Once we have discussed the project with you by phone, we will send you a pack containing a consent form, a parent/carer questionnaire, a Social Communication Questionnaire and information explaining what you need to do. When you have read and signed the consent form you should complete the 2 questionnaires. These will take you 30-45 minutes and provide us with information about your child and his/her diagnosis.

We would also like copies of the medical report about your child’s diagnosis and the ‘statement of special educational needs’ (if your child has one). If you are unable to photocopy the reports, you can send us the documents and we will photocopy them and return the originals to you. If you don’t have copies your paediatrician or another member of the team should be able to provide them. When you have all the forms and documents together, you can return them to the research team in the stamped addressed envelope in your pack.

You may have already been given a pack by your child development team who discussed the project with you. In this case we will phone you once we receive the contact form from the child development team to make sure you have all the information that you need. You may also contact us if you have any queries.

For each child whose parents/carers consent to them being included on ASD-UK the information will include:

The child’s name and date of birth, parents/carers names and dates of birth, address and contact details, the type of ASD diagnosis and other medical conditions, information about your child’s communication, developmental skills and behaviour. We would also like to know the school your child attends (if he/she attends one), and a small amount of information about family members, such as siblings names and dates of birth and other family members with a diagnosis of ASD.

The research team will store your child’s data on a secure database at Newcastle University. The data will be password protected and only available to staff working on the project. Consent forms and any paper correspondence will be stored in locked filing cabinets in a secure office. No identifying information will ever be released to researchers or anyone else.

Once your child reaches the age of 18, the data will remain on file. However, should your child contact the ASD-UK team at the age of 18 and wish to have all identifiable information removed, then this will be done. We will retain information on year of

birth, gender, local authority diagnosis and postcode

 (see section ‘Do I have to take part?).

The data you send us about your child and family will be used by us to answer important research questions. In addition, we will contact you from time to time to ask you to provide updates about your child’s development. You will be kept informed about progress of ASD-UK, and interesting developments, through an annual newsletter and our website: www.asd-uk.com

You will not be contacted more than once or twice a year to tell you about a research project. Whether you are contacted more than once will depend upon the length of the study and what is required. A Steering Committee, which includes parent members, makes the decisions about which studies to support. Researchers will not have access to your details. The contact with you will be made by the ASD-UK team and if you are interested you will have the information you need to reply to the researchers. You do not have to take part in any study if you do not wish to.