The Australian Collaborative Cerebral Palsy Research Group
The Australian Collaborative Cerebral Palsy Research Group is focussed on uncovering the causes of Cerebral Palsy (CP), particularly the genetic causes. The group has been leading the field for over 20 years and is headed by Emeritus Professor Alastair MacLennan.
The group currently has support through the NHMRC and the Cerebral Palsy Foundation to build a Cerebral Palsy Biobank and pursue cutting edge genetic research.
**Excitingly, under E/Prof Alastair MacLennan and Prof Jozef Gecz, the International Cerebral Palsy Genomics Consortium has been established.
The Australian Cerebral Palsy Biobank
The Biobank aims to collect genetic material and clinical information to facilitate ongoing genetic research in CP.
A biobank is a collection (repository) of biological samples that can be linked to other medical information for research purposes, while appropriately maintaining the privacy of participants.
By collecting and storing genetic material (DNA from biological samples such as blood) from children with CP and their families and linking characteristics of this DNA to clinical information about their health, we hope to create a powerful and ongoing research tool that may contribute to important discoveries about the condition.
The Australian Cerebral Palsy Biobank has been established to encourage collaborative genetic research in CP around the world and into the future.
Our current study aims to uncover genetic changes in individual patients and to investigate if these unique changes contributed to Cerebral Palsy (CP).
Of particular interest is children with CP and their parents, families where more than one child has CP and families where both parents and children have CP.
These studies use advanced technologies to examine each individuals genetic material in great detail. A technique called ‘exome sequencing' is used to look at all parts of the genome that code for proteins. This approach has been very successful in medical research of other conditions such as autism.
All general enquiries about The Australian Cerebral Palsy Biobank can be directed to firstname.lastname@example.org or (08) 8313 1404.
If you or your family are interested in participating please contact the research group in your state (below) to find out more. A member of the research team will answer any questions you may have and help organise collection of your family's blood samples.
Participation is easy and all your details will be kept secure and confidential. Your personal details will not be distributed to third parties. Information about what is involved can be found in the study information sheets below.
Women's and Children's Hospital
Investigator: Associate Professor Ray Russo
Enquiries to Kelly Harper or Jessica Broadbent: email or (08) 8313 1404.
New South Wales
The Children's Hospital at Westmead
Investigators: Dr Mary-Clare Waugh, Dr Mathias Axt and Dr Brian Martin
Enquiries to CP Biobank Study Coordinator: email or (02) 9845 3067.
Sydney Children's Hospital (Randwick)
Investigators: Dr Kevin Lowe and Dr Michael Stening
Enquiries to CP Biobank Study Coordinator: email or (02) 9382 1757.
Lady Cilento Children's Hospital
Investigator: Dr Lisa Copeland
Enquires to CP Biobank Study Coordinator: email or (07) 3068 2950
Frequently asked questions
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?
The Biobank and related studies are unlikely to benefit those who currently have Cerebral Palsy. However, the results of these studies will help to understand its causes. This information could help to design Cerebral Palsy prevention strategies and possibly reduce its incidence in future generations.
Is there any financial incentive for enrolling in this research?
No. The Biobank is open to consenting volunteers and there are no financial incentives. You would only be required to donate blood 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 Biobank?
Withdrawal will not compromise the care of you or your child in any way. You can withdraw from the Biobank at any time via one of the following methods:
- Phone (08) 8313 1404
- Email email@example.com
- Complete the withdrawal form for Women's and Children's Hospital, The Children's Hospital at Westmead, Lady Cilento Children's Hospital or Sydney Children's Hospital and post it to the Reply Paid address below:
The Australian Cerebral Palsy Research Study (77)
Discipline of Obstetrics and Gynaecology
University of Adelaide - Women's and Children's Hospital
Reply Paid 60836
North Adelaide SA 5006
Can I be identified?
No. Participants cannot be identified or disclosed in publications or to a third party.
Does this research have ethical approval?
Yes. Our research has independent ethical approval. For ethical concerns please contact the ethics committee in your state below.
- SA: Children's, Youth and Women's Health Service Human Research Ethics Committee , Ph: (08) 8161 6521
- NSW: Sydney Children's Hospitals Network Human Research Ethics Committee, Ph: (02) 9845 1253
- QLD: The Queensland Children's Health Services (RCH) Human Research Ethics Committee (HREC), Ph: (07) 3636 9167
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, Robinson Institute, Discipline of Obstetric and Gynaecology;
- The Women's and Children's Hospital, Adelaide;
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.
Current research projects
- Does genetic variation predispose to cerebral palsy?: familial pattern study.
- Defining the role of genetic variations in cerebral palsy causation.
- Identifying genetic pathways to cerebral palsy.
An international research team including the University of Adelaide has found further evidence that rare gene mutations can cause cerebral palsy, findings which could lead to earlier diagnosis and new treatments for this devastating movement disorder.
University of Adelaide researchers have uncovered a genetic signal common to both cerebral palsy and autism.
A new international research group has been established to investigate the underlying genetic causes of cerebral palsy, spurred on by the discoveries of University of Adelaide researchers.
The Australian Collaborative Cerebral Palsy Research Group, based at the RRI under the leadership of Emeritus Professor Alastair MacLennan and Professor Jozef Gecz, recently established the International Cerebral Palsy Genomics Consortium (ICPGC), which held its first meeting this week in Adelaide.
The Australian Collaborative Cerebral Palsy Research Group is a collaboration of scientists and clinicians interested in cerebral palsy in all states of Australia.
The initiating group is based in the Discipline of Obstetrics and Gynaecology within the School of Paediatrics and Reproductive Health at the Robinson Institute, The University of Adelaide.
Research team members
- E/Prof Alastair MacLennan
- Ms Jessica Broadbent
- Mrs Kelly Harper
- Ms Gai McMichael
- Dr Michael O'Callaghan
- Dr Clare van Eyk
Other team members and associate investigators
The Australian Collaborative Cerebral Palsy Research Group
Third Floor Norwich Centre
55 King William Road
North Adelaide SA 5006
Phone: +61 8 8313 1404
Facsimile: +61 8 8313 1333
South Australian Cerebral Palsy Register
Women's and Children's Hospital, Level 8 Rieger Building,
72 King William Road,
Phone - (08) 8161 7242
Fax - (08) 8161 6088
Email - firstname.lastname@example.org
CARA (Community Accommodation and Respite Agency) Inc
Community Accommodation and Respite Agency Inc (CARA Inc) provides a range of quality community based accommodation and respite services for adults and children with severe and multiple disabilities residing in South Australia. Services are designed to suit the individual needs and abilities of CARA's consumers with a strong emphasis on community inclusion - assisting people with a disability to identify and develop their interests and to participate in the wider community whilst promoting independence.
98 Woodville Road, PO Box 237,
SA, 5011 SA, 5011
Phone - (08) 8347 4588
Fax - (08) 8347 4508
Email - email@example.com
Novita Children's Services (Formerly Crippled Children's Association of South Australia Inc.)
Novita provides therapy, equipment and home support services to South Australian children and young people with physical disabilities. Its technology division, NovitaTech, assists people with a disability to lead fuller and more satisfying lives with the help of aids and equipment.
171 Days Road, PO Box 2438
Regency Park, Regency Park,
SA, 5942 SA, 5942
Phone - (08) 8243 8229
Fax - (08) 8243 8238
Email - firstname.lastname@example.org
Leveda is an accommodation and community support service for people with disabilities and complex support needs located in Adelaide, South Australia. Leveda strives to assist individuals with disabilities who have complex support needs to become valued members of the community through the development and provision of high quality support ensuring that individuals have maximum control over their own lives.
2 Peaton Avenue,
Phone - (08) 8396 5699
Fax - (08) 8 8396 5677
Email - email@example.com
SCOSA - Spastic Centres of South Australia (Formerly CAS - Community Access Services of South Australia)
SCOSA is an independent organisation which promotes and supports the involvement of people with disabilities in their local communities. The philosophy of SCOSA is to facilitate individual choice, encourage community inclusion and promote people's potential, engage and develop opportunities for clients while ensuring people with disabilities have the necessary physical assistance, health care support and flexibility in arrangements to meet their ever changing needs.
100 Woodville Road, PO Box 49,
SA, 5011 SA, 5011
Phone - (08) 8347 2664
Fax - (08) 8347 2208
Email - firstname.lastname@example.org
New South Wales
Cerebral Palsy Alliance
University of Notre Dame
PO Box 560
Darlinghurst NSW 1300 Australia
Phone - (02) 8204 4492
Email - email@example.com
The Cerebral Palsy Alliance
Founded in 1945, Cerebral Palsy Alliance was the first organisation of its kind in the world for cerebral palsy. Today, Cerebral Palsy Alliance provides a range of essential services from over 80 sites throughout NSW and the ACT. For further information or donations please call 1300 30 29 20.
321 Mona Vale Rd, PO Box 184,
Terrey Hills, Brookvale,
NSW, 2084 NSW, 2100
Phone - (02) 9479 7200
Fax - (02) 9479 7293
Ability Centre is a not-for-profit disability service provider that supports Western Australians living with cerebral palsy, autism and other physical and intellectual disabilities and their families.
It provides the following key service streams: therapy and health; shared living; assistive technology and equipment; disability employment services; and goodwill engineering.
106 Bradford Street,
Coolbinia, Mt Lawley,
WA, 6050 WA
Phone – 1300 106 106
Fax - (08) 9444 7299
Email – firstname.lastname@example.org
21 St Johns Avenue, PO Box 719,
New Town, Moonah,
TAS, 7008 TAS, 7009
Phone - (03) 6228 4488 or toll-free 1800 001 141
Fax - (03) 6228 4564
Email - email@example.com
Scope is a leading service provider for children and adults with disability across Victoria. Scope provides services that positively affect the daily lives of people with disability. Scope is committed to overcoming the personal, structural and attitudinal barriers that limit people with disability from participating in the community.
830 Whitehorse Road, PO Box 608
Box Hill, Box Hill,
VIC, 3182 VIC, 3182
Phone - (03) 9843 3000
Fax - (03) 9843 2030
Email - firstname.lastname@example.org
Yooralla Society of Victoria
Yooralla is one of Victoria's oldest and largest non-profit community service providers. It helps Victorian children and adults who live with a disability acquired from birth, accident, ill health or age to do everyday things that most of us take for granted - things like eating, moving about, talking, showering, working and generally living independently.
Level 2, 244 Flinders Lane, PO Box 200
Melbourne, Flinders Lane,
VIC, 8009 VIC, 8009
Phone - (03) 9650 4077
Fax - (03) 9654 7779
Email - email@example.com
Cerebral Palsy League of Queensland
League Mission Statement
"The Cerebral Palsy League of Queensland will provide quality services and supports which will enable and empower people with cerebral palsy and related disabilities to create and access opportunities to lead valued lives as respected and equal members of society within their family and community."
55 Oxlade Drive, PO Box 386
New Farm, Fortitude Valley,
QLD, 4005 QLD, 4006
Phone - (07) 3358 8003
Fax - (07) 3254 1291
Email - firstname.lastname@example.org
Cootharinga Society of North Queensland
The Cootharinga Society of North Queensland provides quality individualised support to people with disabilities. The Society works with clients and the community to enhance services and resources to North Queenslanders with disabilities. Recognising that people with disabilities are marginalised in the community, the Society works actively to break down barriers and provide support and assistance in non-institutional settings within the community.
Cnr Warburton and Landsborough Streets, PO Box 792,
North Ward, Castletown, Hyde Park,
QLD, 4812 QLD, 4810
Phone - (07) 4759 2000
Fax - (07) 4779 9443
Email - CSNQ@cootharinga.org.au