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New
York Birth Defects Tracking Program Program
Title: New York State Congenital Malformations Registry
Organization: New York State Department of Health
Project Period: September 2003–June 2008
Project Director: Charlotte Druschel, MD
Grant Title: Population-Based Birth Defects Surveillance Programs
and the Utilization of Surveillance Data by Public Health Programs
Project Summary
The New York State Congenital Malformations
Registry (CMR) is a statewide, population-based birth defects
registry that includes regional neural tube defects (NTDs)
surveillance. In New York, hospitals and physicians are mandated to
report children diagnosed with birth defects up to 2 years of age.
The CMR has also worked with Family Health to examine how well
children with birth defects are being referred to early intervention
programs and to inform families of available services.
Project Goals and ActivitiesSurveillance
- Perform on-site hospital audits and training sessions to
improve hospital reporting of birth defects cases.
- Encourage use of the reporting handbook developed by CMR
staff, available to hospitals through the Health Provider
Network.
- Develop protocols to systematically check that hospital
reporting remains timely, accurate, and complete.
- Publish a CMR annual report.
- Analyze and report on trends in folic acid use among
reproductive age women.
Prevention
- Analyze and report on trends in folic acid
use among reproductive-age women.
- Send NTD data to the National Birth Defects
Prevention Network as requested.
- Evaluate the recurrence prevention
educational mailing program for women with NTD-affected
pregnancies in the state that have been reported to the CMR.
- Maintain and evaluate recurrence prevention
counseling.
- Help in developing folic acid promotional
products to support New York State’s folic acid activities.
Referrals
- Work with statewide organizations that deal
with birth defects or children with special needs to help
increase their visibility among affected families.
- Maintain the Family Notification Project.
- Analyze the Integrated Child Health
Information System database for information about mortality,
morbidity, and participation of families in special programs.
Date:
January 03, 2008
Content source: National Center on Birth Defects and Developmental
Disabilities
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