Topical Rapamycin Trial now open to participants New Zealand wide
We are delighted to let you know that this study of a new cream for the treatment of facial angiofibroma is now open to participants from anywhere in New Zealand. The first two people in New Zealand have completed 6 months of daily use of the cream and three other people in the South Island are currently using the cream. There are 30 people around the world who have used or are currently using the cream as part of the study.
Christchurch Hospital is the only place in NZ where the study is being carried out, therefore costs of travel to Christchurch will be provided as part of being involved. This study is the first opportunity for people with TSC to take part in a clinical trial in NZ and give people with TSC opportunities to access treatments that might otherwise not be available.
The study involves 8 clinic visits over about 8 months including screening and follow up for the study, daily application of the cream and filling in a diary. Out of pocket expenses including travel from anywhere in NZ to Christchurch for clinic visits as part of the study are reimbursed. Anyone aged 6-65 with facial angiofibroma might be suitable for this study, so if you or a family member are interested please contact firstname.lastname@example.org (or 03 364-1157) or email@example.com for more information.
Special thanks to principal investigator Dr Caroline Mahon for her informative talk about the trial and skin manifestations of TSC at our AGM held in July. An audio recording of her talk and her slide presentation is now available to view on our youtube channel https://youtu.be/T5A74h9Qc_U