Resources for Health Professionals & Researchers
This section provides information for health professionals on proper procedures for reporting birth defects, research and publications.
- 25 Year Report - Statistical Summary of Children Born 1983 through 2007
- 2008 Report - Statistical Summary of Children Born in 2008 and Diagnosed Through 2010
- 2007 Report - Statistical Summary of Children Born in 2007 and Diagnosed Through 2009
- 2006 Report - Statistical Summary of Children Born in 2006 and Diagnosed Through 2008
- 2005 Report - Statistical Summary of Children Born in 2005 and Diagnosed Through 2007
- 2002-2004 Report - Statistical Summary of Children Born in 2002-2004 and Diagnosed through 2006
- 1998-2001 Report - Statistical Summary of Children Born in 1998-2001 and Diagnosed Through 2003
- 1996 Report - Statistical Summary of Children Born in 1996-1997 and Diagnosed Through 1999
- 1995 Report - Statistical Summary of Children Born in 1995 and Diagnosed Through 1997
- 1994 Report - Statistical Summary of Children Born in 1994 and Diagnosed Through 1996
Procedures for Reporting to the Registry
- Handbook – Directions for Reporting Congenital Malformations
- ICD-10 Codes – List of Reportable Conditions
Requesting Congenital Malformations Data
- Data Request Frequently Asked Questions
- Aggregate Level Data Request
- Individual Level Data Request
- Individual Level Data Continuation Request
- Data Use Agreement
Current Research Projects/Updates
The New York State Bureau of Environmental & Occupational Epidemiology is currently working on several research projects. Researchers specializing in epidemiology, statistics, medicine, demography and computer science are continuously working towards improving operating procedures of the Registry.
- National Birth Defects Prevention Study (NBDPS)
The NBDPS is one of the largest studies on the causes of birth defects in the United States. NBDPS researchers study information from babies born between 1997 and 2011. Mothers of more than 30,000 babies with birth defects and 10,000 babies without birth defects took part in this study. Although interviewing mothers of babies in the study stopped in March 2013, researchers continue to analyze this rich source of information on birth defects.
NBDPS has made key contributions toward understanding the risk of having a baby with a birth defect when specific medications are used just before and during pregnancy. Data from NBDPS have demonstrated that mothers who are obese have a much higher risk for having a baby with a number of different major birth defects. This study has also confirmed results from previous studies that found that women who smoke cigarettes during pregnancy have a higher risk of having a baby with a cleft lip, cleft palate, or both.
- Birth Defects Study to Evaluate Pregnancy ExposureS (BD-STEPS)
BD-STEPS builds upon the foundation of birth defects research from the National Birth Defects Prevention Study. This new study further examines findings from the National Birth Defects Prevention Study and follows up on leads to understand more about what causes birth defects and how to prevent them.
BD-STEPS began collecting data on children born on or after January 1, 2014. Results from BD-STEPS will provide researchers with more knowledge about what factors might raise or lower the risk of having a baby with a birth defect. BD-STEPS aims to focus on risk factors that a woman may be able to change such as diabetes, obesity, physical activity, treatments for chronic medical conditions (such as asthma or high blood pressure), treatments for infertility, and other medication use during pregnancy.
BD-STEPS will dig deeper into the results of that past research, which will help women and healthcare providers make the best health decisions for mothers and their babies
- MD STARnet
MD STARnet is collecting critical information about muscular dystrophy that will improve the care for people living with and affected by the condition.
MD STARnet is a multi-state research network effort funded by the US Centers for Disease Control and Prevention with sites in Arizona, Colorado, Iowa, Georgia, and western New York. A major goal of MD STARnet is to find everyone born after 1981 that has Duchenne and Becker muscular dystrophy (DBMD) within the aforementioned states in order to estimate the number of people with DBMD and changes over time. Another goal is to gather information about people who have the disorder. The information collected through MD STARnet will help researchers gain a better understanding of the health and service needs of people with DBMD and their families, and be of interest to physicians, public health officials, therapists, educators, patients, their families and the support organizations that serve them.
- Congenital Heart Defects Across the Lifespan
In 2012, the US Centers for Disease Control and Prevention received funding to enhance and expand public health tracking of congenital heart defects across the lifespan. With this new funding, the Centers for Disease Control and Prevention is working on a project with the New York State Department of Health, Emory University, and the Massachusetts Department of Public Health to develop population-based tracking of adolescents and adults with congenital heart defects. The objectives of these tracking activities are to better understand the survival, healthcare use, and long term outcomes of adolescents and adults affected by congenital heart defects. Understanding health issues and needs across the lifespan is vital to improving the lives of individuals born with these conditions.
- Tracking Fetal Alcohol Syndrome
The US Centers for Disease Control and Prevention is working with states to develop Fetal Alcohol Syndrome tracking systems. It is important to know how many people have Fetal Alcohol Syndrome, in order to:
- understand and identify vulnerable populations;
- target prevention and treatment resources; and
- evaluate the strengths and limitations of various prevention, intervention, and treatment strategies.
If you are interested in reviewing or using data collected by the Congenital Malformations Registry, please contact us.
Publications by Topic
Publications by Topic is a bibiograpy with links to Department of Health staff publications arranged by subject matter, such as maternal exposures, genetic factors, etc.
The National Preconception Curriculum & Resources Guide for Clinicians – Before, Between and Beyond Pregnancy. The National Preconception Care Clinical Toolkit was designed to help primary care providers, their colleagues and their practices incorporate preconception health into the routine care of women of childbearing age.
The National Center on Birth Defects & Developmental Disabilities. By translating science into action, they provide the credible health information consumers, health care professionals, and policymakers need nationwide to improve the lives of children and adults with disabilities, blood disorders, and birth defects.