Consensus Guidelines for Care of the Neonate with Ichthyosis (Nonsyndromic and Syndromic Epidermal Differentiation Disorders)
Northwestern University
Overview:
When babies are born with disorders of skin scaling (called ichthyosis), quality of care can vary based on the experience of the care team. Even among experts, practice variation exists with respect to monitoring and treatment. There is a need to bring together experts, including pediatric dermatologists, neonatologists, nurses, social workers, pain management specialists, and patient/family stakeholders to develop guidelines that reflect their experience and evidence in published articles. We have reviewed the literature to create a foundation for recommendations and will have monthly meetings to develop consensus statements about management for four presentations, those with: a tight shiny membrane (collodion), ABCA12 mutations (also known as “harlequin ichthyosis”), presentation with blistering at birth, and solely redness or scaling of the skin. After developing consensus statements with high agreement, we will publish findings in a pediatric journal to ensure broad access.
Status:
This was funded through a 2024 PeDRA Consensus Guidelines Grant.