Durham, North Carolina 27710


The goal of this research study is to discover the genetic and environmental factors that contribute to the cause of neural tube defects such as spina bifida and anencephaly. Ultimately, this type of research may result in improved diagnosis, improved treatment and possibly prevention.

Study summary:

Participation in the study is entirely voluntary. Individuals who are currently pregnant and the pregnancy has been diagnosed with anencephaly or acrania quality to participate. Participation involves: 1. Completing a written consent form 2. A phone conversation to collect family and medical information 3. Collection of blood samples from both parents of the pregnancy 4. Provide a fetal DNA sample (cord blood, fetal tissue or amniotic fluid) 5. Review of medical records and ultrasound images


Inclusion criteria: Current pregnancy diagnosed with anencephaly or acrania. Exclusion criteria: Does not qualify if pregnancy has already ended and DNA sample is not available.



Primary Contact:

Principal Investigator
Allison Ashley-Koch, PhD
Duke University Health System

Heidi Cope, MS, CGC
Phone: 919-684-0655
Email: heidi.cope@duke.edu

Backup Contact:


Location Contact:

Durham, North Carolina 27710
United States

Heidi Cope, MS, CGC
Phone: 919-684-0655
Email: heidi.cope@duke.edu

Site Status: Recruiting

Data Source: ClinicalTrials.gov

Date Processed: March 16, 2018

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