Date: 07/11/2017

The National Registry for Ichthyosis and Related Skin Types, supported by FIRST, allows Investigators working in the field of ichthyosis access to the patient data they need to achieve medical breakthroughs. Without patient registries, the process of scientific discovery in rare disorders can be slowed or even halted. Studies of these conditions may take years to finish, but registries provide power in numbers.   This power is especially important for studies of genetics and treatments for ichthyosis.

Most recently, the National Registry for Ichthyosis played a key role for researchers from Dr. Keith Choate’s laboratory at Yale University,  in developing the Severity of Scale index - a tool for clinical phenotyping and assessment of therapeutic response for many disorders of keratinization. Read more.

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