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Old Wed Apr 24, 2019, 03:48 PM
Marrowforums Marrowforums is offline
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Interview request: families with pediatric transplant donors or recipients

Student Mary Bartlett at the Institute of Education at London's University College London is researching how parents and children experience the consent process when a child is a stem cell or bone marrow recipient or donor.

The research is exploring how families make transplant decisions and the ways to inform children and parents about transplants. The results will help doctors, nurses and other adults understand what support children and families feel they need to make choices about their health and treatments. This will benefit both parents and children, and may also allow children to become more involved in the decision-making process.

If you meet any of these qualifications then Mary would like to interview you:
  • Your child under 18 has had a transplant or faces one.
  • Your child under 18 was a transplant donor or is going to be a transplant donor.
  • Your family decided that your child under 18 should not be a transplant recipient or donor.
  • You had a transplant when you were under 18.
  • You were a donor when you were under 18.
  • Your family decided that you should not be a transplant recipient or donor when you were under 18.
People from any country are welcome to participate. Interviews will be conducted from May 2019 to April 2020 by phone or Skype, or in person if you are in the London area. There are no costs or payments involved. A Study Information Sheet and a Consent Form will be provided.

If you would like to take part, email Mary Bartlett.
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Old Wed May 22, 2019, 04:55 PM
Marrowforums Marrowforums is offline
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Posts: 909
News update

You can now participate in this research study by completing an online survey.

If you or someone in your family had pediatric transplant experience, as described above, visit the survey page:
You'll be shown a complete explanation of the privacy protections for participants, which are designed to protect your confidential medical information.

Note to Macintosh users:
Use the Chrome or Firefox web browser. The Safari web browser may not be able to load the survey page properly.
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