Congenital Ichthyosis Study started by BPSU

12 November 2018

BPSU have begun a study into the incidence, early management and outcomes at 12 months, of babies born with harlequin ichthyosis (HI) or collodion membrane (CM). These are rare genetic conditions characterised by thick, tight scaly skin and significant neonatal mortality.

Any suspected cases of severe congenital ichthyosis in live newborn or still-born babies should be reported to bwc.bchscinstudy@nhs.net. This includes babies with collodion membrane (a shiny film covering the skin) or harlequin ichthyosis (thick scales encasing the babies’ body). 

The study will run from November 2018 to November 2020 (25 months of surveillance). Follow-up until November 2021 (1 year follow-up). The lead investigator is Dr Fozia Roked from Birmingham Children's Hospital.

For more information please see the RCPCH website.