Birmingham University Behaviour Study

There is a behaviour research project being carried out by Birmngham University starting in November 2003 by Professor Chris Oliver, Project Director School of Psychology, University of Birmingham, Edgbaston. If you would like to participate please contact Prof Oliver by mail, email and telephone. Please note that there is a also a general Lowe Syndrome patient registration form available on the Lowe Syndrome Trust website to provide a medical database for researchers, to be kept by the charity.

University of Birmingham Research into the Characteristics of Genetic Syndromes – Research Summary

Background:
We are a research team at the University of Birmingham, carrying out a large-scale questionnaire study to look at several aspects of mood and behaviour in genetic syndromes. The study aims to improve our understanding of hyperactivity, repetitive behaviour, communicative and social behaviours, mood and self-injurious behaviour and other behaviour problems. The syndrome groups that we are hoping to study include Lowe Syndrome, Cornelia de Lange syndrome, Cri du Chat syndrome, Angelman syndrome, Fragile-X syndrome and Prader-Willi syndrome. A group of individuals who have not been diagnosed with any particular genetic syndromes will also be included in the study.

What the study involves:
The study will involve families and carers of individuals with genetic syndromes completing a questionnaire pack that contains six short questionnaires including:

  1. The Wessex – this questionnaire asks about a person’s skills and abilities.
  2. The RBQ – this questionnaire measures the presence, absence and nature of types of repetitive behaviour.
  3. The Activity Questionnaire – the Activity Questionnaire measures an individual’s energy and level of activity.
  4. The CBQ – this questionnaire examines the presence and absence of challenging behaviour.
  5. The MIPQ-short version – this measures an individual’s general mood level and interest in activities.
  6. The BSCQ – this questionnaire examines the development and nature of an individual’s socialisation and communication behaviour.

We estimate that the questionnaires take no longer than 30 minutes to complete in total.

How the information will be collected:
We will contact the appropriate syndrome groups to gain permission for them to send our questionnaires to families and carers of individuals who are members of the Angelman syndrome, Cri du Chat syndrome, Cornelia de Lange syndrome, Fragile X syndrome and Prader-Willi syndrome support groups.  Through the syndrome groups, we will write to each member telling them about the nature of the study and inviting them to take part. We will include an information sheet outlining details about being involved in the study, consent to take part, how to withdraw from the study and confidentiality.  Should families wish to take part in the study, they will be asked to complete the enclosed questionnaire pack and return it directly to us using an SAE provided.

At the end of the study:
Each parent or carer will receive an individual summary report describing what was found in the questionnaire. A summary of the overall findings of the project will be circulated to everybody involved that wishes to see a copy.  We will laso make a summary available for families via any newsletters or websites and make presentations at syndrome meetings if the organisers wish us to. Any requests for advice concerning a participant will be referred to Professor Chris Oliver, Clinical Psychologist. It is possible that families may be invited to participate in further research after the study however, consenting to participate in this study will not mean that families are obliged to do so.

The University of Birmingham, School of Psychology Research Ethics Committee has reviewed the study. If you have any concerns about the conduct of this study please contact

Professor Orford at the University of Birmingham Ethics committee.for further information please contact:
Professor Chris Oliver, Project Director
School of Psychology
University of Birmingham
Edgbaston
Birmingham B15 2TT
0121 414 4909
e-mail c.oliver@bham.ac.uk