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Are you interested in participating in the TREATMENT Trial?

From the clinical trials team and the TSC Clinic at Sydney Children’s Hospital:

Sydney Children’s Hospital, Randwick, NSW is participating in an International research study of a new treatment for facial angiofibromas associated with Tuberous Sclerosis Complex (TSC), in people of all ages.

The treatment is an ointment which contains a medication called Rapamycin. Rapamycin is approved in Australia to prevent organ rejection in people who have had a kidney transplant. However, it is not approved to treat facial angiofibromas. The study aims to learn more about how safe and effective Rapamycin is when used in an ointment and applied to the face over a 6 month period.

If you would like more information, please speak with your treating physician who will be able to discuss this treatment with you, or contact the Study Coordinators at Sydney Children’s Hospital on 02 9382 1757

This is the trial into Topical Rapamycin that is being funded by ATSS thanks to generous donors and an amazing fundraising effort. Please contact the number above if you would like to discuss participating in this study.


0 Responses

  1. Greg and Dawn Bowra

    Emily is 11 yrs old now and has the angiofibromas. She has been going up to the Westmead children’s hospital since being diagnosed. If this study could help Dawn and I would be glad to assist and trial the cream. Feel free to check her file at the hospital to see if she would be suitable for the trial.


    Greg and Dawn Bowra.

    • Clare Stuart

      Hi Greg and Dawn (and Emily!),
      Because ATSS isn’t running the study, I can’t check her file. Perhaps I could pass on your contact details to the nurses at Sydney Childrens and they can email or call for a chat?
      Clare Stuart

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