Harlequin Ichthyosis Medical Records Study
Very exciting news for the harlequin ichthyosis community!
Boston Children's Hospital is conducting a medical records study of people with harlequin ichthyosis.
What is the purpose of the study?
Boston Children's is collecting medical records of individuals with harlequin ichthyosis. By reviewing these records, they hope to further the understanding of this disorder and how it affects people throughout their lives.
Who can participate?
Boston Children's is accepting medical records of anyone diagnosed with harlequin ichthyosis, of any age, if sent by the end of 2018.
What do I need to do?
They will ask you to obtain copies of your/your child's medical record. There are no hospital visits or activities as part of this study. Contact the study coordinator. Kate Pawlowski, for more information.
Study Coordinator - Kate Pawlowski, Boston Children's Hospital Division of Genetics