Dear Parent,
Re: Research project: Cognitive and motor performance in Down's syndrome.
We are currently running a medical research project on learning at University College London. We would be very grateful if you would consider allowing your child to take part. The information that we get from this study will allow us to gain a better understanding of function in the brain and how this relates to symptoms in Down's Syndrome and other childhood disorders. The type of task which we would ask your child to perform is quite varied but would include tasks such as recognising and naming different emotions in faces, copying symbols, making finger responses to items appearing on a computer screen, tests of motor function and so on.
We are interested in the type of task which can be performed well and the type of task which presents some difficulty. The tasks are ones which we have previously used and they seem to be stimulating and enjoyable to perform. We hope that this will be the case for all our participants although we will of course end the testing session at any point if your child does not wish to continue.
Participation in this study is entirely voluntary. You are free to choose not to consent for your child to take part or to withdraw your child from the study at any time without having to give a reason. If you choose not to volunteer your child or to withdraw your child from the study once volunteered, this will in no way affect your future medical care. All information will be treated as strictly confidential and will be rendered anonymous before being stored on computer. Participation in the study will in no way affect your legal rights or those of your child.
We anticipate that the sessions would last between 2 and 3 hours although there would be as many rest breaks as necessary. The testing would take place at the Institute of Cognitive Neuroscience at Queen Square. Of course, your child will not be identified in any way when we come to present the data in scientific publications. We will reimburse any travel expenses which you incur while travelling to and from the testing session.
We would hope that you would find the research which we do to be interesting and relevant. If you feel that your child might enjoy taking part and you would like to help us then please complete the form and send it back to us in the stamped addressed envelope provided. If you have any questions about the study or about participating in our project then please get in touch with us. You can contact me directly on behalf of our research group. My phone number is 0207 391 1169.
Many thanks for your time,
Dr. Steve Kelly
Professor Uta Frith
Dr. Marjan Jahanshahi
Institute of Cognitive Neuroscience,
University College London
Note:
This letter from UCL has been posted on the website of SW Thames branch
of Down's Syndrome Association at the request of UCL in accordance with
DSA policy.