Join CP Quest

Bringing researchers and the CP community together to make a meaningful impact

Community and Researchers together

CP Quest is a world-leading collaboration between the Cerebral Palsy Alliance research team and people with cerebral palsy, their families, carers and advocates.

The group was launched in 2015 to better integrate the lived experience of people with cerebral palsy into our program of research.

As a complex and varied condition, everyone’s experience of cerebral palsy is different and unique – and it is these unique perspectives that are vital for researchers to deeply understand when conducting research into treatment and prevention of CP.

To date, CP Quest members have been involved in dozens of research projects, authored important academic papers and sharpened our research with the perspectives and insights only lived experience can bring. We strongly believe that involving the CP Community in CP research:

Improves the quality of research
Ensure that research is meaningful for families
Reduce the time it takes to move research into practice
Result in better outcomes for people living with CP and their families

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people with cerebral palsy and their family members are actively involved in guiding our research priorities through CP Quest

My name is Shannon Clough. I am very passionate about CP research and have proudly taken on the role as Chair for CP Quest. When my beautiful son Ethan was born at 26 weeks he was diagnosed as being profoundly deaf and having severe cerebral palsy. I, like so many parents, wanted answers and, even though I have now lost my beautiful boy, I still want those answers for people with cerebral palsy and their families. Cerebral Palsy Research is the way.

I invite you to join CP Quest and help guide CP research now and into the future. You can be involved as little or as much as you wish.

Your knowledge and experience is highly valued, and we need your help.

Download guide

CP Genomics Reference Group

Are you interested in helping influence the direction of genetic research in cerebral palsy (CP)? As this specific area of CP research continues to gain momentum, the Cerebral Palsy Research Institute has started a Community Reference Group for CP Genomics. This group will help make sure the voices of people with lived experience of CP will be heard.

Interested in joining? Please email Natasha Garrity

Stem Cell Reference Group

To join the Cerebral Palsy Alliance Stem Cell Reference Group. The purpose of this group is to provide the perspective of people with cerebral palsy and their families to shape decisions about research priorities, specific research questions and the design of new stem cell research projects.

Interested in joining? Please email celltherapies@cerebralpalsy.org.au

CP Quest research priorities

Our research team is constantly working collaboratively with people with cerebral palsy, families, carers and the wider community to understand that our research is informed by, and meaningful to, people with cerebral palsy

Find out more about our research priorities.

Joining CP Quest is an opportunity to:

Communicate your views and ask key questions to ensure that issues important to you and the CP Community are identified and prioritised.
Expand your knowledge about CP research, observe first-hand how it is undertaken and funded.
Be part of a research team working towards making a difference for people living with CP and their families.
Use your skills and lived experience to improve CP research.

We invite you to join CP Quest and share your lived experience of cerebral palsy as a research partner. For more information, please email us on cpquest@cerebralpalsy.org.au and or click on our expression of interest form.

CP Quest: Expression of interest - Research Partner

Thank you for your interest in being a CP Quest member, your contribution as a person with CP and or a family member is invaluable to our research activities. As a research partner you will become a member of the research team. You will bring your lived experience to help the team, which could be at any stage of the research. For example, planning and making decisions about how research is conducted understand the findings, and sharing the results.

Involvement opportunities are flexible, and are offered via zoom meetings, phone, email, online or face to face.

All opportunities are distributed via email from cpquest@cerebralpalsy.org.au
The information you provide below is stored securely and you can opt out at any time via email.

Once we have received your form, we'll be in touch with the next step.

Thank you!

Name(Required)

First Last

Date of birth(Required)

What is your preferred method of contact?

Mobile

Email address(Required)

Contact number(Required)

Residential postcode (if you live in Australia) or your country of residence.(Required)

Please share with us your lived experience of cerebral palsy.

For example; A) A person with cerebral palsy OR B) A parent or carer of a person with cerebral palsy

To assist us with your assistive technology requirements, please tell us what support you would like from us. We are also able to contact you regarding any accessibility needs, please comment below if you would like this option and the CP Quest coordinator will be in touch.

Please list any other details that you would like to share as a CP Quest member.(Required)

Code of conduct.

We're so pleased you've made the decision to join the CP Quest group at Cerebral Palsy Alliance (CPA) . We value the skills and ideas that you bring to our organisation.
At CPA our core values are at the bedrock of how we work together and how we interact with the world.

CP Quest research partners are accountable for their actions. We encourage you to commit to being:

▪ Passionate: working together with enthusiasm and making things happen together.

▪ Respectful: Being compassionate, inclusive and putting people first.

▪ Ethical: Being professional, accountable and dependable whilst engaging as a research partner.

▪ Curious: To look for ways to make research better.

▪ Courageous: To share your thoughts and opinions about the research project openly and honestly.

We look forward to having you as part of the CP Quest community.

CP Quest terms of reference