Information for parents

in a project to set up a UK research family database of children recently

atypical autism, autism spectrum disorder, pervasive developmental disorder,

or Asperger syndrome . The project is called Autism Spectrum Database-UK

(ASD-UK). Research about ASD often requires large numbers of participants.

ASD-UK will enable large studies to be undertaken to address important

research questions about ASD. At present, the majority of families of

children with ASD do not have the opportunity to take part in research

studies. A national research database will mean that children and families

are more able to participate in research, and have access to research

participate in the ASD-UK project. We are inviting you to give details

about your child’s diagnosis, and about your family; this will give you

the opportunity to take part in ASD research studies. Here is

information to help you decide whether or not you wish to take part.

Please contact us if there is anything you do not understand or if you

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

allow families to take part in research that aims to answer important

questions which may lead to significant advances in the care and treatment

collect data about your child and family, and allow us to answer some

different towns and cities in the UK have agreed to discuss the ASD-UK

project with all parents/carers of children recently diagnosed with ASD and

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

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

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

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

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

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

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

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

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

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

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:

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

information.  If you would like to participate in the ASD-UK project

please fill in the contact form attached to

this information sheet and return it to us in the stamped addressed

envelope. Once we receive the form a member of research team will phone you

form. If you have any questions, please speak to the member of the child

health team who discussed the project with you, or