Birth Defects COUNT Partner Newsletter

Welcome

A Message from the NCBDDD Director

Dear Colleagues:

Welcome to the second issue of Partners COUNT, a newsletter to update partners on the activities of Birth Defects COUNT – CDC’s global initiative to increase folic acid intake among women of reproductive age for the prevention of neural tube defects.

As we approach the year’s end, we are excited to report on Birth Defects COUNT’s recent scientific and programmatic successes, which are highlighted in this issue. We have been very busy this year! In collaboration with partners, our accomplishments include conducting birth defects surveillance workshops in Kenya and Tanzania, holding multiple national meetings in South-East Asia to advance birth defects surveillance and prevention in the region, providing technical assistance to public health professionals working on birth defects prevention in the field, and collaborating on the development of the first annual World Birth Defects Day, to launch in March 2015.

We are so appreciative of the collaborations that have allowed us to achieve these successes, and we continue to seek opportunities to expand our partnerships with other public health professionals and organizations worldwide. We know these accomplishments would not be possible without the help and support of our many partners, and we look forward to continuing to grow and strengthen our collaborations.

We wish you all a very happy and healthy holiday season, and we look forward to working with you in the New Year!

Coleen A. Boyle, PhD, MS hyg

Director, National Center on Birth Defects and Developmental Disabilities

Centers for Disease Control and Prevention

Program Highlight

Advancing training efforts to prevent birth defects: CDC and India EIS Programme collaborative

In early 2012, Dr. Leland Albright, a pediatric neurosurgeon at Kijabe Hospital in Kijabe, Kenya, alerted CDC to what appeared to be a rising number of patients with some serious birth defects of the brain and spine called neural tube defects. He asked CDC to help pinpoint whether the prevalence was actually increasing or if there was simply an increased number of referrals to the hospital from throughout Kenya. Dr. Albright also questioned whether genetic, nutritional or social factors could be causing the increase. Read more

Partner Spotlight

The National Registry of Congenital Anomalies of Argentina: A model for strengthening birth defects prevention in-country

With a population of 40 million and an estimated 750,000 births every year, Argentina ranks as the second largest country in Latin America. The proportion of infant mortality due to birth defects has been increasing in Argentina over the last few decades. In 1980, birth defects accounted for 11% of infant mortality, and by 2012 had increased to an estimated 26%, surpassing as a cause of infant death conditions such as low birth weight and preterm birth. Prompted by this increase and given the absence of statistical tools that could provide knowledge on the prevalence of birth defects, the National Registry of Congenital Anomalies of Argentina (RENAC) was created in 2009, under the national Ministry of Health. The primary objectives of RENAC are to monitor the prevalence of birth defects, assess the impact of interventions, and make medical services available to those affected.

RENAC is built on the active participation of 133 maternity institutions across the country – 122 public hospitals and 11 private maternity facilities – which were incorporated into the system between November 2009 and December 2013. The annual coverage in 2013 was 281,249 births, representing 65% of the public sector and 38.1% of all births in the country. RENAC registers newborns with major structural birth defects, external or internal, identified from birth through hospital discharge and detected during physical examination or by follow-up exams.

The RENAC team in each hospital is generally made up of two neonatologists. The neonatologists collect information on a data collection form attached to the maternal clinical history. On this form, they document any birth defects present in the newborn. A birth defects photo atlas is available for assistance with diagnosing birth defects. In the event that a birth defect is present, it is described by the attending neonatologist, and other data, including birthdate, birth outcome, sex, birth weight, and maternal age, are collected and sent to the Coordination Office monthly through a restricted-access website. The website is also used by the Coordination Office to guide neonatologists on initial management of newborns with birth defects. The Coordination Office reviews the quality of the descriptions and, if necessary, provides suggestions to improve data collection. Birth defects are coded centrally by the Coordination Office using the ICD-10 with the Royal College of Paediatrics and Child Health modification. The information is disseminated through periodic reports containing aggregated and tabulated information such as birth defects prevalence, infant mortality due to birth defects, and data on birth defects prevalence and mortality by province and countrywide. Finally, reports in both hard copy and electronic formats are sent to the participating hospitals and the national and provincial health authorities who used the data to coordinate care services for affected children.

The RENAC’s Coordination Office makes intensive use of communication and information technologies to interact with hospitals across the country. In addition to the platform that utilizes forums for sending information, RENAC has an e-learning tool that offers courses on birth defects. In this way, RENAC is a major contributor to the prevention of birth defects and the provision of quality care for affected newborns in all of Argentina. RENAC’s next step, in partnership with other public sector healthcare organizations in Argentina, is to coordinate networks for referral to genetic and other treatment services for birth defects when appropriate.

For more information, please contact Boris Groisman at bgroisman@gmail.com.

News & Events

CDC partners with Tanzania to support birth defects surveillance training efforts

Birth Defects COUNT’s collaboration with Tanzania began two years ago when CDC birth defects experts met Dr. Rogat Kishimba, a Field Epidemiology and Laboratory Training Program (FELTP) fellow from Tanzania, at a CDC meeting. Rogat spoke about a birth defects project he wanted to start in Dar es Salaam. His interest in and enthusiasm for this topic was evident. CDC staff assisted Rogat in developing his project and publishing his findings, and connected him with partners who could help advance his work. Rogat recently attended an international training on birth defects surveillance, where he was able to continue to expand his knowledge on the topic, and share his Tanzanian experience with others. Last year, a CDC colleague working with FELTP-Tanzania approached Birth Defects COUNT staff wanting to expand this collaboration through trainings and technical assistance.

In early December 2014, CDC supported a train-the-trainer workshop for key surveillance personnel at Tanzania’s National Institute of Medical Research. The purposes of this workshop were to increase awareness about the importance of and need for birth defects surveillance in Tanzania and to establish a solid skills base for birth defects surveillance in Tanzania.

In 2015, two important birth defects conferences will be held in Tanzania. The first Africa-regional intermediate birth defects surveillance workshop will be held in Arusha, Tanzania in March 2015, in collaboration with the International Clearinghouse for Birth Defects Surveillance and Research, the World Health Organization, the International Federation for Spina Bifida and Hydrocephalus, and CDC. The goals of the workshop are to bring attention to birth defects issues in the region, to help participating countries advance their current plans for birth defects surveillance, and to help address the critical need for birth defects data in the region. Further, the March of Dimes 7th International Conference on Birth Defects will be held in September 2015 in Dar es Salaam, Tanzania. This conference will provide an opportunity for those who participated in the earlier March 2015 workshop to present their surveillance work.

Birth Defects COUNT and Tanzania are currently exploring options for future collaboration. Meanwhile, the program continues to provide technical assistance as needed to help advance ongoing birth defects surveillance work in Tanzania. CDC is excited about the developments in Tanzania and hopes this surveillance work will serve as a foundation for birth defects prevention efforts in Tanzania and the wider region.

Announcing the first annual World Birth Defects Day

A network of 11 global health organizations is leading the launch of the first annual World Birth Defects Day, to be observed March 3, 2015.

The purpose of the worldwide observance is to raise awareness about birth defects prevention and care; to stimulate action among publics, governments, non-governmental organizations, and health care providers to improve the care of affected children; and to widely implement primary prevention programs for birth defects.

Our vision is for every child to be born with the best health possible and the potential for a full and productive life.

For further information on the network and/or World Birth Defects Day, please contact the International Clearinghouse for Birth Defects Surveillance and Research at icbd@icbd.org.

Key Resources

Population Red Blood Cell Folate Concentrations for the Prevention of Neural Tube Defects

British Medical Journal has published a new study about the association between the amount of folate in women’s blood (“blood folate concentrations”) and the risk of having a baby affected by a neural tube defect, such as spina bifida or anencephaly. In this study, CDC researchers and other scientists found that blood folate concentrations can predict the risk of neural tube defects in a population. These findings will be useful for public health officials interested in understanding the risk of folate-sensitive neural tube defects in their communities and planning prevention programs. For more information on this study, read the Key Findings summary here.