Abstract:

In November 2018, the Society for Birth Defects Research and Prevention published a position statement on surveillance and prevalence estimation of neural tube defects. This position statement was co-authored by Vijaya Kancherla, Susan L Carmichael, Marcia L Feldkamp, and Robert J Berry, and was endorsed by the organizations co-sponsoring this webinar.

In the position statement, the Society for Birth Defects Research and Prevention, then known as the Teratology Society, acknowledges the value of accurate measurement of total prevalence of neural tube defects (NTDs) in the population to support prevention, and advocates for rigorous surveillance worldwide. Birth defects surveillance is fundamental to understanding NTD prevalence, and an essential aspect of prevention efforts. Active, multi-source, population-based birth defects surveillance with standard data collection protocols is vital to assess baseline NTD prevalence for an effective implementation of folic acid intervention in countries, and to evaluate its global impact. The choice of pregnancy outcomes included in the numerator and denominator of the prevalence formula significantly influences the estimated burden of NTDs in the population. Methodologic approaches in prevalence estimation have differed across countries, with different pregnancy outcomes (i.e., live births, stillbirths, and elective terminations for fetal anomalies) used in the numerator and denominator of the prevalence formula. The Society recommends the following approaches for standardizing and improving NTD prevalence estimation globally: 1) Prevalence estimates should be based on population-based surveillance that utilizes multiple data sources and standard data collection protocols to include all pregnancy outcomes and infant mortality; and 2) Prevalence estimates should capture all NTD phenotypes and include anencephaly and NTDs that co-occur with other major birth defects or syndromes. The Society acknowledges that inaccuracies in surveillance findings have a potential to hinder prevention and should be addressed and corrected as soon as possible. The society will continue to champion for improved NTD prevalence estimation procedures and standardizing them globally.

In this webinar, Dr. Kancherla will discuss the position statement as well as her current relevant research.

Speaker Biography:

Dr. Vijaya Kancherla is a Research Assistant Professor in the Department of Epidemiology at Emory University Rollins School of Public Health. She also works as an epidemiologist at the Center for Spina Bifida Prevention at Emory University. Dr. Kancherla has received her doctoral degree in Epidemiology from the University of Iowa, and completed post-doctoral training as Pierre Decouflé Fellow with the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at the US Centers for Disease Control and Prevention (CDC). Her current work includes neural tube defects surveillance, risk factors and health outcomes research, prevention, and policy. She serves on various research national and international committees examining neural tube defects epidemiology and global prevention strategies for these birth defects. She is an affiliate member of the International Clearinghouse on Birth Defects Surveillance and Research (ICBDSR), member of the Public Affairs Committee of the Society for Birth Defects Research and Prevention (BDRP), and a consultant to the to the WHO Department of Maternal, Newborn, Child and Adolescent Health and the Nutrition International’s Folate Task Team.

Webinar recording Link: https://youtu.be/h8MR4EziXxg