CMR News Bulletins

Neural Tube Defect Surveillance Project

About the Study...

The Centers for Disease Control and Prevention provides funds to support birth defects surveillance activities and the use of surveillance data to guide prevention and intervention programs.

In New York...

  • Active case ascertainment of all NTDs (liveborn and prenatally diagnosed) is being performed in the lower Hudson Valley area (Dutchess, Orange, Putnam, Rockland, Sullivan, Ulster and Westchester Counties).
  • Cases are located through the areas' hospitals which have obstetrical services, perinatologists, genetic centers, obstetricians, midwives, prenatal clinics, ultrasound facilities, and AFP laboratories.
  • For recurrence prevention, families who experience a neural tube defect affected pregnancy will be contacted to provide information regarding recurrence risk and use of folic acid. Timely outreach to these families can prevent 50-75% of recurrences.

Confidentiality...

All information collected is kept confidential. Employees involved in this project are subject to the confidentiality procedures set forth in Public Health Law 206(1)(j). Identity of the women and their offspring is not used in any report or publication, nor is it shared with anyone outside the study, including insurance companies or governmental agencies. Records are kept under lock and key. Identifying information is removed from computer files, which are password protected.

For specific questions regarding the National Birth Defects Prevention Study in New York State, please contact the Project Director, Dr. Charlotte Druschel at (518) 402-7990 or (888) 296-8192.