Sharing your experiences of overseas stem cell treatment for cerebral palsy

We want to understand the journey that people with cerebral palsy, their families and carers 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 this. Outcomes from this work will be used to inform the public, researchers and professionals on overseas stem cell treatment, commonly termed stem cell tourism.

This survey is conducted online 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.

  • 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

If you have any questions directly related to this study: Madison Paton: madison.paton@cerebralpalsy.org.au

If you have any concerns and/or complaints about the project, the way it is being conducted or your rights as research participants, and would like to speak to someone independent of the project, please contact the Cerebral Palsy Alliance Human Research Ethics Committee (EC00402, a registered National Health and Medical research Council Human Research Ethics Committee) Tel: +61 2 9975 8000

Approval #MP02549(v2)

The link to confirm your eligibility and consent, and participate in this study: https://redcap.sydney.edu.au/surveys/?s=8R3L7EKKL7

Please feel free to share this link if you know of anyone who may be eligible and interested in participating.