Frequently Asked Questions

“What is Cerebral Palsy?”
“How will this study benefit those with cerebral palsy?”
“What is involved in taking a buccal swab test?”
“Is there any financial incentive for enrolling in this study?”
“What if I want to withdraw from the study?”
“Can I be identified?”
“Will the results of the overall study be available to me?”
“Will my specific results be available to me and will I need any medical consultations?"
“Does this study have ethical approval?”
“Who is sponsoring this study?”
“Is there a cure for Cerebral Palsy?”

“What is Cerebral Palsy?”
Cerebral Palsy is a group of disorders affecting movement and posture. The severity of symptoms ranges from mild problems with muscle coordination to severe spasticity of all four limbs.  Cerebral palsy is non-progressive, meaning injury to the brain does not get worse over time and it is diagnosed in about 1 in 500 babies born in Australia.

“How will this study benefit those with cerebral palsy?”
This study is unlikely to benefit those who currently have cerebral palsy.  However, the results of the study will help to understand its causes.  This information could help to design cerebral palsy prevention strategies and possibly reduce its incidence in future generations.

“What is involved in taking a buccal swab test?” 
A buccal swab test is very easy and non-invasive.  All we ask you to do is rub the inside of your mouth with a special swab (provided by us) for one minute and return this to us within 24 hours using the reply paid envelope provided.

“Is there any financial incentive for enrolling in this study?”
No.  This study is open to consenting volunteers and there are no financial incentives.  You would only be required to perform a cheek swab for you and your child (taking approximately one minute) and fill out a questionnaire.  The time required is minimal but your contribution to our knowledge of cerebral palsy is potentially great.

“What if I want to withdraw from the study?”
You can withdraw from the study at any time.  Simply call us on 1800-800-254 or send an email to cerebralpalsy@adelaide.edu.au.  Your withdrawal from the study will not compromise the care of you or your child in any way.

“Can I be identified?”
No.  Participants cannot be identified or disclosed in publications or to a third party.

“Will the results of the overall study be available to me?”
Yes.  Participants who indicate they would like to receive a summary of the overall study results will be contacted by mail at the conclusion of the study.   This is not likely to be until beyond 2010.  Detailed study results will be available upon request.  Remember that information about you personally will not be disclosed in any way – the results provided will represent the group of 10,000 participants tested.

“Will my specific results be available to me and will I need any medical consultations?”
No, except in a few cases.  In most cases, the clinical implications of our results are unknown so there is no need for any further medical consultations.  In a few cases, some gene mutations we are testing have been linked to blood clotting disorders.  If you test positive for any these gene mutations you can request (on the consent form) that we inform you.   We will recommend that you see your general practitioner for further testing and clarification of any clinical implications of our results.  Only a small number of participants (less than 1%) are likely to be affected with these mutations.  Thereafter your results are de-identified (i.e. not linked with your name and pooled with the results of all participants).

“Does this study have ethical approval?”
Yes.  Our study has independent ethical approval.  For ethical concerns please contact the Children’s, Youth and Women’s Health Service Human Research Ethics Committee on: (08) 8161 6521.

“Who is sponsoring this study?”
This study is not sponsored by any commercial company but is conducted with funding from the National Health and Medical Research Council and the  Cerebral Palsy Foundation.  The South Australian Cerebral Palsy Research Group is supported by:

• The University of Adelaide, Discipline of Obstetric and Gynaecology;
• The Women’s and Children’s Hospital, Adelaide;
• Cerebral Palsy Registers in each state.

“Is there a cure for Cerebral Palsy?”
There is no known cure for cerebral palsy.  People with cerebral palsy receive a range of treatments to minimise their impairments but there is currently no cure.  Studies like this are particularly important as they may result in prevention and/or treatment strategies to reduce the incidence of cerebral palsy in future generations.