UK Patients in the International PC Research Registry helped to develop endpoints for clinical trials
UK registry patients gathered in London on June 20-22, 2025, to help develop assessments for a clinical trial sponsored by Kamari Pharma who is developing a drug for PC and TRPV3.
One of the challenges of designing a clinical trial for rare skin diseases like ours is knowing how to specifically measure if a treatment is working or not working. Professor Edel O’Toole served as the onsite PI of the study, with Dr. Marianne de Brito, Dr. Majeeda Patel, and Tosin Ogundero helping as well. Special thanks to PC Project volunteer, Teresa Burrell, for her tremendous assistance. All, including our fabulous PC and TRPV3 patients, dedicated time and worked hard to be part of the process.
Stay tuned for more information on this trial!
Since we were together anyway, we couldn’t help but have a mini-patient support meeting, complete with presentations and group discussions. Some patients met others like them for the first time and as always, being with others who completely understand is always emotional and uplifting. Our patients and their loved ones are truly the best of people. They want to live pain free but are living life brilliantly in the meantime!
After the event, one of our participating patients, Lauren, wrote:
“I just wanted to take this opportunity to thank you again for organising and facilitating the London End Point event. I truly cannot understate the incredible difference that the PC Project has made to my life. In London, being surrounded by fellow PC patients, I felt a deep sense of community and acceptance.
For the first time I knew that I did not need to hide my feet, explain my limp, or feel shame for my condition.
I am really impressed by all of the work that the PC Project is doing and would love to volunteer to help in any way that I can.”
