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Partner Spotlights

Top of Page Developing a Sustainable Surveillance and Prevention System for Birth Defects: Spina Bifida and Hydrocephalus Care Foundation of Nigeria

Published November 13, 2017

The Spina Bifida and Hydrocephalus Care Foundation of Nigeria (SBH Nigeria) was founded in 2009 and is a national non-governmental organization that supports individuals living with a neural tube defect or hydrocephalus (a build-up of fluid in the brain). The goal of SBH Nigeria is to provide information on ways to prevent neural tube defects and hydrocephalus and to create awareness of longer-term health issues related to these conditions.

In 2014, SBH Nigeria, with support from the World Health Organization, held its first meeting on birth defects tracking (public health surveillance) and prevention. This meeting highlighted the need for more training of healthcare professionals on how to track and prevent birth defects. This led to a pilot training on birth defects tracking and prevention for healthcare professionals in South East Nigeria. This project was done in collaboration with the Ebonyi State Ministry of Health and was supported by the Center for Clinical Care and Clinical Research of Nigeria.

The training participants will work together to help develop a birth defects tracking system and provide high quality health care for children with birth defects in Ebonyi State and Nigeria.

FETP Residents Advance Birth Defects Prevention in Kenya

Published May 18, 2017

In a previous issue of the Birth Defects COUNT newsletter, we highlighted the beginnings of a successful collaboration with the Kenya Ministry of Health and the Kenya Field Epidemiology Training Program (FETP). Since then, Birth Defects COUNT has continued to support FETP residents across a variety of projects to advance birth defects prevention throughout Kenya.

Current FETP activities in Kenya include projects focused on the following assessments:

  • Assessing the birth prevalence (frequency) of neural tube defects that occur in a given time frame.
  • Assessing knowledge, attitudes, and practices of healthcare providers in preventing, identifying, and managing birth defects
  • Identifying factors impacting the use of folic acid fortified staples among women of reproductive age in the Kisumu East district
  • Determining the prevalence of folate deficiency and folic acid utilization among pregnant women attending the Pumwani Maternity Hospital antenatal clinic.

CDC is supporting these efforts by assisting FETP residents with the following:

  • Project development
  • Analysis
  • Publication of findings

Providing opportunities for residents to attend international birth defects surveillance, evaluation, and prevention training workshops.

Accelerating the Pace of Prevention: Emory University’s Center for Spina Bifida Prevention

Published February 19, 2016

The Center for Spina Bifida Prevention (CSBP) was founded in 2012 at the Emory University Rollins School of Public Health. The goal of CSBP is to track and accelerate the pace of prevention of folic acid-preventable spina bifida and anencephaly globally. In spite of unequivocal evidence that folic acid prevents the majority of spina bifida and anencephaly-affected pregnancies, many countries still do not have efforts to increase folic acid consumption among women of reproductive age. Fortification of staple food products with folic acid has been shown to be very effective in increasing folic acid consumption, thereby preventing spina bifida and anencephaly.

CSBP works with many partners to provide science-based support for mandatory folic acid fortification in countries that currently do not have a mandate, and to monitor implementation and effectiveness of existing fortification efforts. CSBP identifies governmental and non-governmental organizations and individuals (e.g., parents and physicians) to serve as champions to achieve folic acid fortification in their respective countries. For example, in South Africa, CSBP worked with parents to facilitate a discussion around the current status of fortification, both folic acid and iron, and how to improve the fortification program, while in Nigeria, CSBP was instrumental in working with parents to raise awareness about spina bifida prevention and care.

Recently, CSBP partnered with PUSH!, a comprehensive consortium working to advance global prevention, care and research efforts for spina bifida and hydrocephalus. Members include Boston Children’s Hospital, the International Federation for Spina Bifida and Hydrocephaly, CDC, March of Dimes, the Food Fortification Initiative, Spina Bifida Association, Hydrocephalus Association, and others. CSBP is aiding PUSH! to examine and evaluate country-specific efforts toward prevention, monitoring and care of spina bifida and hydrocephalus.

Through its partnerships, CSBP aims to eliminate folic acid-preventable spina bifida and anencephaly worldwide, and help countries meet the Sustainable Development Goals, set forth by the United Nations, by reducing morbidity and mortality associated with preventable neural tube defects.

Introducing the Food Fortification Initiative: Enhancing grains for healthier lives

Published September 9, 2015

The Food Fortification Initiative (FFI) is a multi-sector, international partnership working to prevent neural tube defects and nutritional anemia by advocating for fortification of industrially milled wheat flour, maize flour, and rice.

FFI’s role is to support national leaders working towards grain fortification. The support provided through multi-sector collaboration includes

  • Advocacy resources on the benefits of fortification;
  • Technical assistance for planning, implementing, and monitoring sustainable fortification programs; and
  • Tracking progress at the country and global levels.

Fortifying wheat flour with folic acid prevents thousands of neural tube defects globally each year. Yet FFI estimates that only 30% of the world’s industrially milled wheat flour is fortified with at least folic acid and/or iron. A higher percentage (48%) of industrially milled maize flour is fortified, but very little maize flour is industrially milled. Recently, FFI added rice to its portfolio of fortification vehicles. Rice represents a previously untapped opportunity as only 1% of industrially milled rice is fortified.

A policy planning forum held in Mauritius in 2002 helped launch FFI. This was the first public effort to organize wheat flour fortification at a global level. At the time, widespread wheat flour fortification in the Middle East and the Americas had been established through regional strategies, but there was no international body focused on advocating for fortification to become a standard milling practice globally. Partners involved in this early effort included Emory University, the Micronutrient Initiative, U.S. Centers for Disease Control and Prevention, and the Association of Operative Millers (now known as the International Association of Operative Millers).

By 2003, this global partnership was called the Flour Fortification Initiative, initially focusing on the fortification of wheat flour. In 2014, the partnership’s name was changed to the Food Fortification Initiative to reflect the addition of industrially milled maize flour and rice to the scope of work.

In 2002, 44 countries had legislation to fortify wheat flour. Now 83 countries have legislation to mandate fortification of wheat flour, maize flour, and/or rice. FFI looks forward to further advancing global grain fortification efforts in collaboration with Birth Defects COUNT.

FFI has a small Global Secretariat at Emory University in Atlanta, Georgia, USA. Individual staff members are based in Canada, India, The Netherlands, Thailand, Uganda, and Viet Nam.

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

Published December 15, 2014

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

Introducing the International Federation for Spina Bifida and Hydrocephalus: Spina bifida is our public health concern

Published June 2, 2014

Created in 1979, the International Federation for Spina Bifida and Hydrocephalus (IF), a non-governmental organization based in Brussels, is the global umbrella organization for 50 national and regional spina bifida and hydrocephalus organizations. IF works to improve the quality of life for people with spina bifida and hydrocephalus and prevent the occurrence of spina bifida.

In recent years, the rates of neural tube defects have decreased in some countries; however, there is still much work to be done. Expanding mandatory food fortification with folic acid to countries where neural tube defects remain prevalent is an important goal for IF and among their core activities. To this end, IF fully supports CDC’s Birth Defects COUNT global initiative to reduce death and lifelong disabilities resulting from neural tube defects.

Primary Prevention and Access to Care

“I was aware that folic acid reduced chances of conceiving a baby with spina bifida from the books I read when planning a pregnancy. But my third pregnancy was unplanned and Hattie was born with spina bifida…I would recommend that governments promote folic acid use to all women of childbearing age, whether they are planning a family or not!” – Zoe Burnay

In 2005, IF members adopted the IF Policy Statement on Prevention of Neural Tube Defects and Mandatory Food Fortification calling for action to

  • Promote the health benefits of folic acid,
  • Ratify a policy calling on all countries to fortify staple foods with folic acid, and
  • Encourage further research on the prevention of spina bifida and hydrocephalus.

According to Lieven Bauwens, IF Secretary General, “We are interested in the development and implementation of global prevention policies, fortification, supplementation, or any other strategy. This is a good way of using our members’ expertise to explain to their governments why and how the WHO standard on prevention of neural tube defects should be implemented.”

IF values collaboration with partners and maintains a strong network with experts in spina bifida and hydrocephalus worldwide. In 2009, IF engaged in a new partnership with Bayer HealthCare Pharmaceuticals to raise awareness of spina bifida and hydrocephalus in Europe. The alliance produced two joint reports on the prevention of neural tube defects , including spina bifida. Together, IF and Bayer continue to collect and disseminate critical information about the prevention of neural tube defects globally.

Prevention measures for the next generation should not diminish efforts towards treatment, care, and support for those with spina bifida and hydrocephalus. Despite ongoing medical advances, many children and adults living with spina bifida and hydrocephalus continue to experience barriers in accessing comprehensive multidisciplinary treatment and care services. IF is concerned that individuals living with these conditions also experience stigma and discrimination, and therefore aims to increase inclusion in education and the workforce, as well as improve access to lifelong medical treatment and care.

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