Update March 2020

Have you had a confirmed diagnosis of Lamellar ichthyosis?

Are you 18 or over?  If you are a parent, is your child 12 or over? 

Does your Lamellar ichthyosis present with large flat brownish scales with minimal inflammation (not too red)?

There is a new double blind, randomised control study beginning very soon for patients in the UK. The study will involve you attending a clinic in London 6 times over 16 weeks. Travel expenses will be paid. The initial visit will be a screening visit. During the study you will not be able to continue taking oral retinoids nor use salicylic acid, lactic acid or urea on your skin. You will be able to use moisturisers.   You will receive either a dummy cream (1 in 3 chance) or one of two doses of the new cream that is being researched which you will need to apply twice a week. After the study period is over, all participants will be eligible to receive the new cream for a further 12 weeks.  ISG members were emailed inviting them to reply if they are interested in participating.

Please contact the ISG if you are interested by emailing us here.

February 2019

There will be a clinical trial starting in the UK, hopefully in 2019, for Lamellar ichthyosis, initially for adults over 18 and later for children age 12 to 18 as well.

The new treatment is a topical retinoid which will be applied twice a week.  The trial will compare the retinoid with a placebo (dummy cream).  All participants can opt to receive the topical retinoid in an extension to the study, so anybody with Lamellar ichthyosis who participates will eventually receive the active cream.

The paperwork for the trial is still going through the regulatory procedures – ethical approval etc and there will be more information available after this has been completed.

Professor Edel O’Toole

Consultant Dermatologist

Chairman, Medical Advisory Board, Ichthyosis Support Group