Supporting members through Medical Trials

Alongside funding the groundbreaking CMN research carried out by Professor Kinsler and the research team at UCL GOS Institute of Child Health and The Francis Crick Institute, as a charity, we also work hard at supporting our members who participate in the CMN research projects, such as those who’ve give skin biopsies and those trialling new treatments.

Four of our members are currently trialling a MEK Inhibitor with the aim to reduce the swelling and itch of nodular CMN due to the BRAF mutation.  Another member is trialling the drug as a potential treatment for CMN related melanoma. The trial to reduce the swelling and itch linked to the BRAF mutation is somewhat different to the trial targeting CMN related melanoma, however some of the side effects are the same.

This year we have established a focus group for the four families whose children are trialling the MEK Inhibitor to treat the swelling and itch.  The focus group gives families the opportunity to share experiences and support with one another throughout the clinical trials and, helps us as a charity to understand the impact the trial has on day-to-day life for our members so we can best respond to support needs in an informed way.  One family has been participating in the trial for over 18 months, and so being slightly ahead in the journey has provided invaluable insight for families who have commenced treatment more recently.

Click here to read more about the MEK Inhibitor trial.