THE CENTRE FOR ATTENTION, LEARNING AND MEMORY
STUDY INFORMATION SHEET
(for parents of children aged under 16 years)
We would like to invite you and your child to take part in our research study. Before deciding, we would like you understand why we are doing this research and what it would involve. It would be very helpful if you could take a few minutes to read this information and consider it.
If you have any questions about the study, please make contact with the researchers. Their contact details are at the end of this Information Sheet and they will be delighted to discuss the study with you. If you decide to take part then a member of the research team will go through this sheet with you again before the study begins, and answer any further questions.
Part1: What does the study involve?
What is the purpose of this study?
The Centre for Attention Learning and Memory (CALM) is part of the Cognition and Brain Sciences Unit, which is funded by the Medical Research Council. CALM is run by a group of scientists interested in understanding the learning problems experienced by many children and where possible, overcoming these difficulties. To do this,we work with the child to measure different mental skills important for learning – such as short-term memory. This information will be fed back to the person that provided you with this Information Sheet, who will discuss it with you. One aim of this study is that it helps shape the support that your child might receive. A second aim is that the researchers build a picture of the different skills that children have which will help identify new methods for improving learning.
Why have we been invited to take part?
Your child has come into contact with an NHS or community service that has recommended that you take part. This might be your local school’s special educational needs co-ordinator (SENCO), your child’s speech and language therapist or educational psychologist, or a member of the Child and Adolescent Mental Health Services team. We call these professionals your child’s ‘referrer’. Our assessments might be useful in shaping the support that child receives from this referrer. This is why you have been invited to take part.
Do we have to take part?
No, it is up to you to decide to join the study. We will describe the study and go through this information sheet again in person. If you agree to take part, we will then ask you to sign forms that provide consent to participation of you and your child. Even if you provide this consent, you are free to withdraw at any time without giving a reason. This will not affect the standard of care or support that your child receives.
What will happen if we decide to take part?
You and your child will be invited to visit the Centre at a time convenient to you both. When you are here a researcher who is a psychologist will sit with your child and work through a number of assessments in areas such as memory, basic language skills and attention. These are all designed for use with children, and where possible we havedesigned these like games, and they tend to take around 5 to 10 minutes each. There will be plenty of breaks and in total it will take around two hours. You are welcome to sit with your child while the assessments take place if you wish. We have some questionnaires for you to complete. These tell us about your impressions of your child’s strengths and challenges, as well as a little about your family history. You will be compensated for the time you spend at the Centre with a payment of £6 per hour plus a mileage cover of 0.25p per mile. We can give a larger contribution to travel expenses in special circumstances (for instance if you and your child live a long way from the Unit).
Is there anything else that I will be asked to do?
We would also like to take a saliva sample from your child, so that we can view their DNA at a later date. This is entirely voluntary - you are under no obligation to agree to this. This information will not be usedin understanding the strengths and challenges faced by your child, and the information from the genetic analysis will not be sent to the referrer. But, by analysing the DNA from many hundreds of children, we can explore the genetic differences across children, focussing on particular gene families that we think might be involved in brain development. Only members of the research team would have access to this data, and it would be stored in an anonymised form (only we would know which sample is from which child). If you are happy for your child to give a saliva sample then we have another information sheet about that, which we can give you when you visit the Centre.
We would also like to take an image of your child’s brain, using our magnetic resonance imaging scanner (MRI). Again this is entirely voluntary, and no scan information will be sent to the referrer. But, with brain images from many children, the researchers want to relate particular learning difficulties to specific brain differences. Your child would be given a copy of their brain scan to take home. If you are happy for your child to have the scan then we have another information sheet with more details on it, we can give you a copy of this when you visit the Centre.
Finally, in the consent form you will be asked if you would like to be contacted about any possible future studies. You are under no obligation to agree to this, and even if you did then you are under no obligation to respond to any future contact.
What are the possible advantages and disadvantages of taking part?
The risks involved in this study are very low: the procedures that are used have all been tried and tested with many hundreds of children with no ill effect. The advantage of taking part is that we can provide a detailed assessment of your child’s strengths and difficulties. This may be useful to the referrer in helping your child in the future. Furthermore, this work could lead to studies that seek to understand why these difficulties occur and how they can be overcome.
What if there is a problem?
Any complaint about the way you have been treated during the study or any harm you might suffer will be addressed. Our complaints procedure is explained in Part 2.
Will our information be kept confidential?
Yes. We will follow ethical and legal practice and all information about you and your child will be handled in confidence. More detailed information about this is provided in Part 2. If having read this information you are now considering taking part in the study, please read the additional information in Part 2 before making any decisions.
Part 2: What other factors should I consider?
What will happen if we don’t want to carry on with the study?
You and your child are free to withdraw from the study at any time, without giving any reason. This would not affect the standard of support that your child receives. If you withdraw from the study, if you would like we can delete all data collected up to your withdrawal.
What if there is a problem?
If you have a concern about any aspect of this study, you should first ask to speak to the Chair of the CALM Management Committee, Professor Susan Gathercole (contact details below). In the very unlikely event of anything untoward happening during your visit, the MRC covers all volunteers against negligent harm.
Will my taking part in this study be kept confidential?
All personal information collected in the course of the study will be handled confidentially. All information is stored securely and in anonymised form that prevents non-authorised users (people from outside of the research team) from linking it with any information that identifies the child or family. The MRC, who funds the centre, complies with the requirements of the Data Protection Act 1998 with regard to the collection, storage, processing and disclosure of personal information and is committed to upholding the Acts core Data Protection principles. All enquiries concerning access to data held by the Cognition and Brain Sciences Unit should be addressed to the Unit Research Governance Officer (Dr Tom Manly, contact detail below) at the Unit in the first instance.
What will happen to the results of this study?
A technical account of the results of our assessmentswill be sent back to the referrer in the form of a report which they can use to guide their support for your child. We will let you know when we have sent this report (via a letter) and you can schedule a meeting with the referrer to discuss it with the referrer. The scientific results of the study will be analysed and studied by the research team below; only members of the research team will have access to the data. These will be reported in scientific papers and published in journals, and may be presented at conferences. You and your child will not be personally identifiable in our description of our findings.
Who is organising this research and how is it funded?
The research is funded by the UK Medical Research Council. All research that recruits NHS patients is looked at by an independent group of people called a Research Ethics Committee. This study has been considered carefully and approved by the East of England, Cambridge East Research Ethics Committee.
I am interested in taking part, what should I do next?
Please complete the attached Expression of Interest form and return it to the Centre.
Contact details of the research team:
The following researchers are based at the CALM research Unit:
Dr Duncan Astle –
Francesca Woolgar-
Dr Joni Holmes –
Professor Susan Gathercole (Chair of CALM Management Committee) –
Dr Tom Manly –
If you would like to speak over the telephone with any of the researchers then please telephone reception (01223 355294) and ask for the team member that you would like to speak to.
Centre for Attention Learning and Memory,
MRC Cognition and Brain Sciences Unit,
15 Chaucer Road,
********
The following researchers are based at the Department of Experimental Psychology, University of Cambridge:
Dr Denes Szucs –
The following researchers are based at NHS Child and Adolescent Mental Health Service:
Dr Ayla Humphrey -
THE CENTRE FOR ATTENTION, LEARNING AND MEMORY
STUDY INFORMATION SHEET
(for children aged 12 to 15 years)
We would like you to take part in our research project. You don’t have to take part if you don’t want to. Before you decide if you want to take part, please read this sheet, which will tell you what we would like you to do. You can talk to the project team or your parents about it.
What is the project about?
We are a group of scientists who work at The Centre for Attention Learning and Memory (CALM) in Cambridge. We want to know more about why some people find it hard to do well at school. We carry out lots of work with children and teenagers that involves us measuring skills that are important for learning. The kinds of things we look at are how well people can remember things, or how well they can listen to sounds, or how well they can concentrate. By finding out more about what is important for learning, we are trying to develop ways to make learning easier.
Why have I been invited?
Someone at your school or someone who helps you with your speech, learning or behaviour has given us your name. We are interested in how children learn and why some children find this difficult. By taking part you would be helping us with this.
Do I have to take part?
No, it is up to you whether you take part or not. If you would like to take part, we will tell you more about the study when we see you. Even if you decide to take part, you can change your mind at any time.
What will happen if I take part?
You will come to the Centre to work with one of us. We will ask you to complete some maths and reading tests as well as other tasks that measure how well you can remember information. Each task only takes about 5 to 10 minutes. You will get plenty of breaks and in total the whole session will take around two hours. Your mum or dad can sit with you while you complete the tasks, if you wanted. We will also ask your mum or dad to answer some questions about you.
Will other people know how I did?
We will keep all of your scores private and will make sure that your name is not on your score sheet. The only people who will even know you have taken part will be the project team and the person who gave your name to us.
What will happen to the results of the project?
We will send your scores back to the person who gave us your name. Other than that only the research team will have access to your scores. We will put together the answers for ALL children and teenagers to look at the results and write up what we find. We will only discuss the results of ALL children and teenagers together, which means that the people who read about our project won’t know any personal information about the individuals who helped us.
Is there anything else that I will be asked to do?
We would also like you to spit in a pot so that we can look at your DNA. DNA contains lots of information about how our bodies work. You do not have to give us a spit sample if you don’t want to. If you do give us a sample, we will look at your DNA with DNA from hundreds of other children. Part of our project is looking at whether different bits of DNA change how we learn.
We would also like to take a picture of your brain using a special machine that works a bit like an X-ray machine. It doesn’t hurt and isn’t dangerous at all. You do not have to do this if you don’t want to. If you do we will be able to see which parts of the brain are important for learning and you will get a picture of your brain to take home.
What if there is a problem?
If you are worried about anything to do with the study, or you have any questions, you should first ask to speak to Professor Susan Gathercole (contact details can be found at the bottom of this sheet).
Contact details of the research team:
The following researchers are based at the CALM research Unit:
Dr Duncan Astle –
Francesca Woolgar-
Dr Joni Holmes –
Professor Susan Gathercole –
Dr Tom Manly –
If you would like to speak to a researcher over the telephone then please telephone reception (01223 355294) and ask for the person you would like to speak to.
Centre for Attention, Learning and Memory
Expression of interest form
Name of parent: ______
Name of child: ______
Child’s gender: ______
Child’s date of birth: ______
Family contact address: ______
______
______
______
______
Family contact email:______
Family contact telephone:______
Name of referrer: ______
Referrer’s contact address:______
______
______
______
Referrer’s contact email: ______
Referrer’s contact telephone:______
Once complete, please return this form to:
The Centre for Attention Learning and Memory,
MRC Cognition and Brain Sciences Unit,
15 Chaucer Road,
Cambridge, CB2 2EF
Or email this form to: