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Research

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.

Genetic tests

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.

Participation

All general enquiries about The Australian Cerebral Palsy Biobank can be directed to cerebralpalsy@adelaide.edu.au 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.

South Australia
Women's and Children's Hospital
Investigator: Associate Professor Ray Russo
Enquiries to Kelly Harper or Jessica Broadbent: email or (08) 8313 1404.

• Download the parent/guardian information sheet (WCH)
• Download the child information sheet (WCH)

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.

• Download the parent/guardian information sheet (CHW)
• Download the child information sheet (CHW)

Sydney Children's Hospital (Randwick)
Investigators: Dr Kevin Lowe and Dr Michael Stening
Enquiries to CP Biobank Study Coordinator: email or (02) 9382 1757.

• Download the parent/guardian information sheet (SCH)
• Download the child information sheet (SCH)

Queensland
Lady Cilento Children's Hospital
Investigator: Dr Lisa Copeland
Enquires to CP Biobank Study Coordinator: email or (07) 3068 2950

• Download the parent/guardian information sheet (LCCH)
• Download the child information sheet (LCCH)
• Download the sibling information sheet (LCCH)

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 cerebralpalsy@adelaide.edu.au
• Complete the withdrawal form for Women's and Children's Hospital,ÌýThe Children's Hospital at Westmead, Lady Cilento Children's HospitalÌý´Ç°ùÌýSydney Children's Hospital and post it to the Reply Paid address below:

The Australian Cerebral Palsy Research Study (77)
Discipline of Obstetrics and Gynaecology
³ÉÈË´óƬ - 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 ³ÉÈË´óƬ, Robinson Institute, Discipline of Obstetric and Gynaecology;
• The Women's and Children's Hospital, Adelaide;
• Tenix

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.

• 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.

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 ³ÉÈË´óƬ.

Research team members

• Ms Jessica Broadbent
• Mrs Kelly Harper
• 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
Email: cerebralpalsy@adelaide.edu.au

South Australia

Women's and Children's Hospital, Level 8 Rieger Building,
72 King William Road,
North Adelaide,
SA, 5006
Phone - (08) 8161 7242
Fax - (08) 8161 6088
Email - cywhs.cpregister@cywhs.sa.gov.au

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,
Woodville, Woodville,
SA, 5011 SA, 5011
Phone - (08) 8347 4588
Fax - (08) 8347 4508
Email - company@admin.cara.asn.au

(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 - enquiries@novita.org.au

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,
Ingle Farm,
SA, 5098
Phone - (08) 8396 5699
Fax - (08) 8 8396 5677
Email - leveda@ozemail.com.au

(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,
Woodville, Woodville,
SA, 5011 SA, 5011
Phone - (08) 8347 2664
Fax - (08) 8347 2208
Email - info@scosa.com.au

New South Wales

Cerebral Palsy Alliance
University of Notre Dame
PO Box 560
Darlinghurst NSW 1300 Australia
Phone - (02) 8204 4492
Email - cpregister@cerebralpalsy.org.au

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
Email: scnsw@tscnsw.org.au

Western Australia

Western Australian Cerebral Palsy Register
Telethon Institute for Child Health Research, 100 Roberts Rd,
Subiaco,
WA, 6008
Phone - (08) 9489 7766
Fax - (08) 9489 7700
Email - linda@ichr.uwa.edu.au

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 – info@abiltycentre.com.au

Tasmania

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 - admin@cptas.org.au

Victoria

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 - contact@scopevic.org.au

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 - yooralla@yooralla.com.au

Queensland

55 Oxlade Drive,
New Farm,
QLD, 4005
Phone - (07) 3358 8122
Email - cpregister@cplqld.org.au

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 - exec@cplqld.org.au

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