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Research

University Of Newcastle

1. Are you happy with healthcare services for you and your child with VCFS?

2. Do you want to have YOUR SAY on your experience of healthcare services?

Dr Linda Campbell and Brooke Sinderberry are currently investigating parent’s experiences of healthcare services in Australia. To do this we would like to conduct a phone interview with parents that currently have a child under the age of 18 years with VCFS. The phone call will be paid for by the researchers and organised at a time that is convenient for you. The interview will take approximately one hour and will focus on you providing your opinions on the current healthcare services that you are accessing, the quality of healthcare and support you feel that your family is receiving or not receiving and ways you think that healthcare and support can be improved. We would like to examine experiences of parents living in rural, regional and urban areas.

The base of our research is the 'Priority Research Centre for Brain and Mental Health' at the University of Newcastle, New South Wales.
If you are interested in receiving more information about the study - please contact:
Brooke Sinderberry – brooke.sinderberry@newcastle.edu.au

or on 02 40335734

Dr Linda Campbell – linda.e.campbell@newcastle.edu.au

This project has been approved by the Hunter New England Health Research Ethics Committee, reference no: 10/07/212/5.03

University of Newcastle

The developmental outcomes of children with VCFS can vastly differ between individuals. While some children meet cognitive developmental milestones and display positive behavioural and psychosocial characteristics, others demonstrate cognitive deficits along with behavioural and psychosocial disturbances. One reason for this variation in the developmental outcomes of children with VCFS may be the presence of protective factors.

Dr Linda Campbell

Centre for Brain and Mental Health Research University of Newcastle

PO BOX 833

Newcastle NSW 2300

Calvary Mater Hospital

Edith Street

Waratah NSW 2298

Ph: (02) 40335729

Fax: (02) 40335692

Protective factors are those factors that promote good developmental outcomes, mental health and wellbeing by reducing the impact of negative risks that may come about due to having a genetic disorder.

Dr Linda Campbell of the University of Newcastle are conducting a study that will investigate protective factors and the impact they have on children with VCFS over time. To do this we will be meeting with mum, dad and children between the ages of 6 months and 8 years of age with VCFS, on two occassions. During the meetings we will investigate children’s cognitive, motor skills, communication, language, adaptative and social skills. We will also talk with mum and dad about their experience of having a child with VCFS. Parents will also be asked to fill out some questionnaires on areas such as parenting stress, parenting satisfaction and social support, as well as questionnaires on their child.

The base of our research is the 'Priority Centre for Brain and Mental Health Research' at the University of Newcastle, New South Wales, but testing will be carried out in Sydney, Melbourne, and Brisbane, so if you are living far away you can still participate in the research.

If you are interested in receiving more information about the study - please contact:

Dr Linda Campbell – linda.e.campbell@newcastle.edu.au

This project has been approved by the Hunter New England Health Research Ethics Committee, reference no: 10/07/212/5.03.

CHERI (The Childrens Hospital at Westmead Education Research Institute)

Currently conducting the following research, to participate please contact CHERI on:

Suite 11, Level 2,
Children's Hospital Medical Centre,
Hainsworth St, Westmead
NSW 2145, Australia.

Locked Bag 4001
Westmead, NSW 2145.
Ph: 02 9845 0418

Email: info@cheri.com.au
Web: www.cheri.com.au

Does the cognitive and psychosocial profile of children with velocardiofacial syndrome (VCFS) differ from an IQ matched control group?

Investigators: Dr Belinda Barton, Head, Children’s Hospital Education Research Institute (CHERI), Children’s Hospital at Westmead (CHW); Neil Nicoll, Psychologist, CHERI; Susan van den Berg, Doctorate of Clinical Neuropsychology Student, Macquarie University; Dr David Dossetor, Head, Department of Psychological Medicine, CHW; Sharon Watt, Neuropsychologist, Neurogenetics Research Unit, CHW; Dr Arthur Shores, Associate Professor, Macquarie University; Dr Meredith Wilson, Head, Clinical Genetics, CHW.

Funding: Perpetual Foundation (2005 – 2006)

Building on our previous research, this study aims to obtain a more detailed profile of specific cognitive and psychosocial functioning of children with VCFS. Studies of children with VCFS have confirmed a wide variation in intelligence, with a high percentage of IQ scores falling in the mental retardation range. Deficits in executive functioning, memory and sustained attention are also reported. However, it is not known whether these deficits are specific to VCFS or due to lower intellectual abilities in individuals with VCFS. This study will compare the cognitive and psychosocial profile of children with VCFS to an IQ-matched control group of children. This will allow us to determine whether some cognitive deficits found in children with VCFS are specific to the disorder or due to lower general intellectual functioning. There is also a high frequency of psychiatric illness such as schizophrenia and bipolar disorder in individuals with VCFS. Prepsychotic or prodromal phases of schizophrenia and other psychotic disorders are characterised by a change in premorbid functioning. As part of this study, children will be screened for symptoms of prepsychotic or psychiatric disorders.
Linda.E.Campbell@newcastle.edu.au

The University of Newcastle are conducting the following research.

Should you wish to paticipate please contact Dr Linda Campbell (details below)