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Does Ichthyosis Affect Growth Among Children?

  • Study HIC#:0809004252
  • Last Updated:02/22/2024

It has long been observed by physicians that children with ichthyosis can be smaller in stature compared to children without ichthyosis. Dr. Mary Williams who is faculty at the University of California San Francisco and a member of the FIRST (Foundation for Ichthyosis and Related Skin Types) Medical and Scientific Advisory Board is one physician who has postulated that growth delay may be more closely tied to certain types of ichthyoses1. Currently, there is no study that has systematically examined this potential association between growth delay and ichthyosis types in a large group despite these long-standing observations. Understanding the relationship between delayed growth and specific genetic types of ichthyoses could allow physicians and parents to intervene early by providing supplemental nutrition and other treatments, which may mitigate decreased growth among children with ichthyosis.

If you or your child has been diagnosed with any type of ichthyosis and is aged 25 years or younger, you can participate by filling out the electronic consent form and a medical record release here: https://yalesurvey.ca1.qualtrics.com/jfe/form/SV_0vv5YDxBZdbUD9Y

For more information about this study, contact: The National Registry for Ichthyosis & Related Skin Disorders ichthyosisgrowthstudy@yale.edu

 1. Williams, M. (2005). Growth failure in children with severe ichthyosis. Foundation for Ichthyosis and Related Skin Types. https://www.firstskinfoundation.org/growth-failure-in-children-with-severe-ichthyosis-2005

  • Age25 years and younger
  • GenderBoth

Contact Us

For more information about this study, including how to volunteer, contact:

Ichthyosis Growth Study

Help Us Discover!

You can help our team find trials you might be eligible for by creating a volunteer profile in MyChart. To get started, create a volunteer profile, or contact helpusdiscover@yale.edu, or call +18779788343 for more information.

Trial Purpose and Description

It has long been observed by physicians that children with ichthyosis can be smaller in stature compared to children without ichthyosis. Dr. Mary Williams who is faculty at the University of California San Francisco and a member of the FIRST (Foundation for Ichthyosis and Related Skin Types) Medical and Scientific Advisory Board is one physician who has postulated that growth delay may be more closely tied to certain types of ichthyoses1. Currently, there is no study that has systematically examined this potential association between growth delay and ichthyosis types in a large group despite these long-standing observations. Understanding the relationship between delayed growth and specific genetic types of ichthyoses could allow physicians and parents to intervene early by providing supplemental nutrition and other treatments, which may mitigate decreased growth among children with ichthyosis.

If you or your child has been diagnosed with any type of ichthyosis and is aged 25 years or younger, you can participate by filling out the electronic consent form and a medical record release here: https://yalesurvey.ca1.qualtrics.com/jfe/form/SV_0vv5YDxBZdbUD9Y

For more information about this study, contact: The National Registry for Ichthyosis & Related Skin Disorders ichthyosisgrowthstudy@yale.edu

 1. Williams, M. (2005). Growth failure in children with severe ichthyosis. Foundation for Ichthyosis and Related Skin Types. https://www.firstskinfoundation.org/growth-failure-in-children-with-severe-ichthyosis-2005

Eligibility Criteria

You may be able to participate in a free and confidential research trial investigating growth delay among children with ichthyosis. The Yale Dermatology Department is looking for study participants who:

  • Are 25 years old or younger
  • Have been diagnosed with any type of ichthyosis

Study participants will be asked to fill out an electronic consent form and a medical record release to allow our team to contact your pediatrician(s) and obtain childhood growth records.

Principal Investigator

For more information about this study, including how to volunteer, contact:

Ichthyosis Growth Study