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Cerebral Palsy Alliance Stem Cell Tourism Survey

Novembro 2019
Cerebral Palsy Alliance

 

Cerebral Palsy AllianceCerebral Palsy Alliance, based in Australia, is a worldwide charity that supports cerebral palsy (CP) research and provides services for CP patients. CP Alliance is conducting a survey of families that have traveled outside their home country to obtain commercial stem cell therapy for their child’s CP. The survey is only open to families from Australia and the United States.

Info for Parents

We want to understand the journey that people with cerebral palsy, their families, and caregivers, take to seek stem cell treatment/s overseas. We want to gather information on the considerations, costs, impact and potential outcomes of this travel and treatment. We have designed a survey to comprehensively address these issues. Outcomes from this work will be used to inform the public, researchers and professionals on overseas stem cell treatment, commonly termed stem cell tourism.

The survey

This survey is conducted online and will take approximately 20 minutes to complete. There is no time limit to complete this survey and you may save and return to any unanswered questions. It is important to also note that some of the questions in this survey are of a personal nature (e.g. marital status, disclosure of costs of treatments, etc.). All information gathered by participants is confidential. Data will be pooled and de-identified and you will have access to the results of this study when this is completed.

Please read the information below and assess your eligibility for this survey. If you are eligible and willing to participate, click on the link to proceed to the survey.

Cerebral Palsy Alliance Stem Cell Tourism SurveyEligibility:

  • Over 18
  • Permanent resident in Australia or US
  • Individual with cerebral palsy or their carer/parent/sibling who travelled outside their country of residence for stem cell treatment/s
  • Stem cell therapy was received specifically for treatment of cerebral palsy
  • Stem cell therapy was not a part of a clinical trial
  • Able to complete questionnaire over the internet
  • Does not have an intellectual impairment

For more information about the survey, please contact Dr Madison Paton: madison.paton@cerebralpalsy.org.au

Info for professionals

Researchers and clinicians agree that stem cells are a scientifically plausible cure for cerebral palsy (CP), and stem cell research is a high priority for those with CP and their families. Stem cell therapies are not yet approved for use in CP or other neurological conditions. There are limited clinical trials recruiting those with a brain injury for treatment with stem cells. Thus families and those with CP often feel that they do not have access to enough treatments locally, and are seeking to try alternatives. The motivation to find more treatment options means that some people will choose to travel overseas to access stem cell treatment. This is commonly termed stem cell tourism.

This survey is unique as we directly assess the experiences of those who have travelled overseas to receive stem cell treatments for cerebral palsy. Developing a public narrative from people who have experienced this process will make an important contribution to this area. For stem cell therapies to be available in Australia and the US, the public voice, along with clinical and scientific backing, will be an important driver of change.

Madison Paton PhDThe survey is complimentary to the work we do at the Cerebral Palsy Alliance as we establish and generate funding to support stem cell research based off a growing evidence-base, with co-design from our CP community. The information and public narrative we gather around stem cell tourism in this survey, will support researchers and clinicians around the world to provide more safe and efficacious treatment options.

Dr. Madison Paton is a Research Fellow at the Cerebral Palsy Alliance in Sydney, Australia. She holds a PhD in stem cell therapies, with nearly 7 years of experience in research investigating the potential of stem cells to treat brain injury. She currently works to design trials and generat funds for stem cell clinical trials. She is an avid science communicator with a passion for research dissemination and ensuring that accurate information on stem cell therapies is available to the public.