Clinical Trial: Maternal Inborn Errors of Metabolism in Pregnancy: A Pregnancy Registry Protocol

Study Status: Enrolling by invitation
Recruit Status: Enrolling by invitation
Study Type: Observational



Official Title: Maternal Inborn Errors of Metabolism in Pregnancy: A Pregnancy Registry Protocol

Brief Summary:

Background:

- People with inborn errors of metabolism can t turn food into energy the right way. This can affect a person s growth and health. Researchers want to know how this condition affects a pregnant woman and her baby.

Objectives:

- To collect data from the medical records of women with an inborn error of metabolism. Also, to create a pregnancy registry of inborn errors of metabolism.

Eligibility:

  • Women with an inborn error of metabolism who either:
  • have been pregnant in the past,
  • are currently pregnant, or
  • have recently talked with their doctor about becoming pregnant.

Design:

  • This study will collect data only. No extra tests will be done.
  • Participants will be in the study for the length of their pregnancy and for 1 year after delivery.
  • Participants will answer questions about their family s health.
  • The participant s doctor will send their medical records to researchers. These may include data about:
  • Last health care visit before pregnancy
  • Blood, urine, ultrasound, or lab results during pregnancy
  • Delivery and recovery after delivery
  • Researchers will ask for the test(s) used to confirm pregnancy.
  • After the participant has h