Birth Defects COUNT Partner Newsletter

Welcome

Dear Partners of Birth Defects COUNT:

I am so proud to say that CDC’s Birth Defects COUNT global initiative celebrated its 5th anniversary this past December! With your collaboration, we have made great strides in reducing death and lifelong disability resulting from neural tube defects. Together, we have built the program from the ground up – creating new global partnerships and broadening existing ones, and collaborating with in-country organizations, Ministries of Health, and public health training programs in South-East Asia, Africa, and Latin America.

Together, we have

• Raised awareness about the severity of neural tube defects and the need for prevention initiatives among public health professionals globally;
• Increased capacity for birth defects surveillance by conducting more than 28 trainings and workshops all over the world, providing assistance on the development of surveillance system protocols to six countries in Africa, and creating training tools to help countries further disseminate knowledge on birth defects surveillance;
• Collaborated on the development and use of the first-ever strategic framework for birth defects prevention in South-East Asia;
• Provided assistance to countries throughout South-East Asia on the development of national plans;
• Developed and implemented projects throughout India to demonstrate the viability of public health interventions to reduce birth defects in the nation; and
• Advanced the science related to neural tube defects prevention, including defining the level of red blood cell folate concentrations in a population that is sufficient for the prevention of neural tube defects, which can be used to guide surveillance and prevention efforts globally.

Along with many of you, our staff have traveled the globe providing technical assistance for capacity-building efforts, and have returned renewed and energized by the great work being done and the enthusiasm shown by people all over the world. In only five years, the Birth Defects COUNT initiative has been able to make a significant contribution to the advancement of birth defects surveillance and prevention efforts globally. We are so proud of these collective achievements and know what has been accomplished is a direct result of your partnership. We sincerely thank you for your expertise, your diligence, and your enthusiasm for this work. We look forward to continuing to work together to positively impact the lives of children and families around the world.

Best,

Joe Sniezek, MD, MPH
Acting Division Director
Captain, USPHS (Ret)
Division of Congenital and Developmental Disorders
National Center on Birth Defects and Developmental Disabilities
CDC

Program Highlight

Birth Defects COUNT Funds Training Programs in Africa and the Middle East

In fall 2015, three birth defects-related mini-grants were awarded to Field Epidemiology and Laboratory Training Programs (FELTP) in Kenya, Nigeria and Afghanistan. Birth Defects COUNT staff will be providing close technical assistance to FELTP residents. There is a great deal of excitement and enthusiasm for these new partnerships!

In western Kenya, residents will be examining the prevalence of major structural birth defects in six county hospitals. Activities will include a retrospective review of medical records, along with an assessment of the current knowledge, attitudes and practices of healthcare providers in the prevention, identification and management of birth defects. Lastly, training workshops are being developed to increase knowledge of birth defects among healthcare providers.

In Abuja, Nigeria, residents will be assessing healthcare provider knowledge, attitudes and practices regarding birth defects and their prevention among all types of healthcare facilities providing obstetric/gynecologic services. A cross-sectional survey is being developed, and healthcare providers from both governmental and private facilities across Abuja will be recruited to complete the survey.

Finally, in Kabul, Afghanistan, residents are working to establish hospital-based birth defects surveillance in one maternity hospital. Currently, no comprehensive birth defects surveillance data exist in Afghanistan, but much anecdotal evidence suggests that birth defects are a major public health concern. The awardee will prospectively collect birth defects data on major external birth defects, such as neural tube defects and orofacial clefts, enroll women in a case control study to assess known risk factors, and assess the feasibility of a follow-up study to examine long-term impact.

Partner Spotlight

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

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.

News & Events

CDC Highlights New Resources and Research at ICBD7

Public health professionals working on birth defects prevention around the world gathered in Dar es Salaam, Tanzania in late September 2015 for the 7th International Conference on Birth Defects and Disabilities in the Developing World (ICBD7). Members of CDC’s Division of Birth Defects and Developmental Disabilities, home of the Birth Defects COUNT initiative, attended and were actively engaged in discussions to advance collaboration.

Dr. Cindy Moore coordinated and co-moderated the first plenary session of ICBD7, in which the speakers discussed the need for improved birth defects systems globally and the challenges associated with birth defects surveillance in different parts of the world. In a symposia titled “Focusing on the Global Efforts for Prevention and Care”, Diana Valencia, a health scientist with Birth Defects COUNT, discussed ongoing collaborations to develop and strengthen birth defects surveillance programs globally. She also gave an overview of Pre-Surv, an Epi Info-based birth defects data collection tool that was developed to facilitate and promote uniformity in data collection globally.

Ibrahim Zaganjor, a fellow with the Birth Defects COUNT initiative, presented on a recent systematic literature review describing the global burden of neural tube defects. The goal of the review is to describe the most current prevalence estimates of neural tube defects worldwide. The soon-to-be-published results identify large gaps in available data, highlight international differences in neural tube defect prevalence, and will help to inform prevention program planning efforts.

If you have questions about these resources, please contact us at BirthDefectsCOUNT@cdc.gov for further information.

Birth Defects Prevention Experts Host Pan American Workshop on Surveillance of Birth Defects and Pre-term Birth

In November 2015, representatives from 16 countries in Latin America attended the “Workshop on Surveillance of Birth Defects and Pre-term Birth” held in San Jose, Costa Rica. The workshop was co-developed and co-facilitated by surveillance experts from the International Clearinghouse for Birth Defects Surveillance and Research, the Argentina National Birth Defects Surveillance Registry (RENAC-Ar), the Neonatal Alliance, the Pan American Health Organization/World Health Organization, Pontifical Xavierian University, INCIENSA, the Latin American Center for Perinatology, Women and Reproductive Health (CLAP), and CDC.

Participants used a web-based online platform prior to the in-person workshop to provide background information on birth defects, pre-term birth and surveillance in order to focus the workshop content on more advanced surveillance concepts. Among other topics, the workshop focused on how to define cases, accurately describe, classify, and code diagnoses, analyze data, and present findings. The workshop format consisted of large group presentations, experience sharing, and small group work sessions.

Although the countries in attendance are in various stages of developing birth defects surveillance systems, with some having had a registry for decades and others just beginning, all felt there were areas for expansion or improvement in their systems. Information sharing among country representatives allowed participants to learn from one another about how to effectively implement processes to develop and sustain surveillance activities and produce high quality data.

It was a very busy week, but also very successful! Participants developed a network to continue discussions, share next steps, and provide technical assistance to one another as they move forward with their surveillance system implementation and expansion work.

World Birth Defects Day Raises Global Awareness of Birth Defects

On March 3, 2015, 34 countries on five continents joined together to support the inaugural World Birth Defects Day. With the goal to raise global awareness about the prevalence and severity of birth defects worldwide, participants reached nearly 3.4 million people via social media platforms by engaging in a Thunderclap and Buzz Day, using the hashtag #WorldBDDay.

This year, a partner group has reconvened, inviting other organizations to join, to continue to bring attention to this global public health issue. The goals for World Birth Defects Day 2016 (March 3, 2016) are to raise awareness about birth defects, reduce stigma, and increase opportunities for prevention by promoting 1) an increase in the number of and improvement to existing birth defects surveillance programs globally; 2) better access to care; and 3) additional research to identify causes, particularly modifiable causes of birth defects.

The partner group invites organizations around the world to participate in World Birth Defects Day 2016 by sharing stories and information about birth defects using the hashtag #WorldBDDay. For more information on how to contribute to these efforts, including instructions for participating in this year’s Thunderclap and Buzz Day, click here.

Key Resources

New Book Highlights CDC’s Work in China

Vanderbilt University Press has published a book titled The China-US Partnership to Prevent Spina Bifida: The Evolution of a Landmark Epidemiological Study. This book documents the history of a project in China that began in 1983 and looked at the role of folic acid in preventing neural tube defects. The book describes the international collaboration between the birth defects group at the U.S. Centers for Disease Control and Prevention (CDC) and the Beijing Medical University. The author, Deborah Kowal, interviewed many current and former scientists and administrators from CDC, Beijing Medical University, and the project counties in China. This fascinating book highlights the important collaborations that contributed to this monumental effort.

For more information on the book, please visit http://www.vanderbilt.edu/university-press/book/9780826520265.