The Impact of Newborn Screening Upon Children with Urea Cycle Disorders

Status: No Longer Recruiting


This study is an online survey looking at the experiences of families and individuals with Urea Cycle Disorders. We are interested in your opinions about your medical care and about the future of newborn screening for Urea Cycle Disorders.

Who is eligible?

  • Any adult with a child who has a Urea Cycle Disorder
  • Any adult with a Urea Cycle Disorder

This study is being done with the support and cooperation of the Urea Cycle Disorders Consortium and the National Urea Cycle Disorders Foundation. We very much appreciate your time and interest.