With no evidence base to inform management, babies may suffer either unnecessary interventions or inappropriate palliation. We hope that comprehensive information collected at 30 days and 12 months will provide a firm basis for advising on future guidelines and services.
The study is led by Dr Fozia Roked from Birmingham Children's Hospital. It is run through the British Paediatric Surveillance Unit, which asks medical doctors to report cases of congenital ichthyosis, and complete a questionnaire about any cases. The study team will look at the findings, and the results will be presented in medical journals and scientific conferences.