Public Health Tools for Congenital Anomalies

Essential tools that can be employed by countries wishing to strengthen national policies on the surveillance of birth defects. This section also contains a toolkit specific to planning for Zika Virus outbreaks.

World Health Organisation (WHO) congenital anomalies-related

Word Health Organisation Congenital Anomalies topic page.

The congenital anomaly section within the WHO Health Topics provides the reader with some general information on the global burden of congenital anomalies as well as some more specific information on topics such as community based support for children with spina bifida and hydrocephalus living in Uganda, guidelines on food fortification with micronutrients, prevention of neural tube defects and use of efavirenz during pregnancy. Links to the Birth Defects Surveillance atlas and manuals are also available here.

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World Health Assembly report on birth defects 2010

World Health Assembly resolution WHA63.17 on birth defects

Global Strategy for Women's, Children's and Adolescents' Health, 2016-2030

WHO Every Newborn Action Plan

Methods for surveillance and monitoring of congenital syphilis elimination within existing systems

United Nations Convention on the Rights of Persons with Disabilities

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World Birth Defects Day

World Birth Defects Day is on March 3 every year. The purpose of WBDD is to: Provide a platform to advocate for increased economic, political, and intellectual support to improve birth defects surveillance, prevention, care, and research by global communities and countries; Raise awareness about the occurrence and impact of birth defects globally; Raise awareness about the need for early and appropriate lifelong care; Raise awareness about the ability of people with birth defects to participate in society; Raise awareness of the global toll of death and disability from birth defects; Raise awareness about the existing opportunities for people with birth defects to achieve their potential. The website has many tools useful for advocacy, and reviews activities worldwide.

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World Health Organization, Regional Office for South-East Asia (WHO-SEARO) Prevention and Control of Birth Defects in South-East Asia Region, Strategic Framework 2013-2017

This framework guides Member States to establish or strengthen national policies and programmes to prevent birth defects and develop national surveillance mechanisms. It promotes integration of birth defects prevention and control strategies into public health programmes like maternal and child health, nutrition, immunization and others. The important role of multisectoral partnerships and networks to support such programmes is duly emphasized.

It is acknowledged that countries in the Region have opportunities to integrate preventive programmes for birth defects in their existing public health and related programmes. However, due to the complexity of the problem, countries may like to prioritize selected birth defects and implement cost-effective strategies, adopting pragmatic and feasible approaches for their prevention in a phased manner. It is hoped that the Member States and partners would find this Strategic Framework useful while designing national plans for prevention and control of birth defects.

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Prevent birth defects – Ensure quality of life and dignity

WHO’s regional Office for South-East Asia (SEARO) policy brief is a reference for those responsible for health policy and planning.  This policy brief is written to help countries accelerate progress toward the unfinished task of MDG4 (Millennium Development Goals) for reducing child mortality.  Programme implementers and health administrators would find the policy brief useful to:  1) plan actions for integrating birth defects prevention and control into existing public health programmes; 2) sensitize stakeholders to the burden and prevention opportunities of birth defects; and 3) develop and strengthen partnerships for birth defects prevention in the region. The policy brief includes specific briefs on elimination of congenital syphilis and congenital rubella, and fortifying food with folic acid.

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Birth Defects in South-East Asia – A Public Health Challenge:  Situational Analysis

This regional situation analysis of countries in South-East Asia is useful to develop prevention programmes for birth defects in the Member States of the region.  This situational analysis is based on published literature and information obtained from experts and national programme managers from the Member States in the region.

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ICBDSR: PEACE Tool – Population Estimate of Attributable Fraction of Congenital Conditions Everywhere

PEACE is a tool that customizes the whole calculation of population attributable fraction for your population - a population with a certain pattern of risk factor frequency and outcome frequency. You enter your population data (risk factor frequency and outcome frequency) and the tool calculates the number of cases estimated to be due to the exposures in your setting. 

The PEACE tool is a useful accompaniment to the concept of Triple Surveillance – surveillance that covers the prevalence of risk factors, of congenital anomalies, and of healthcare outcomes:

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NCBI bookshelf Reducing Birth Defects: Meeting the Challenge in the Developing World 

Reducing Birth Defects: Meeting the Challenge in the Developing World includes descriptions of successful programs and presents a plan of action to address critical gaps in the understanding, prevention, and treatment of birth defects in developing countries. This study also recommends capacity building, priority research, and institutional and global efforts to reduce the incidence and impact of birth defects in developing countries. 
This study addresses the steps needed to improve the prevention of and care for birth defects by:

  • Reviewing current knowledge and practices for a healthy pregnancy
  • Identifying cost-effective opportunities for prevention of birth defects and support of families with a handicapped infant
  • Recommending capacity-building, priority research, and institutional and global efforts to reduce the incidence and impact of birth defects in developing countries

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Public Health Genomics Toolkit for Health Needs Assessment in Congenital Disorders

The PHG Foundation is a non-profit think tank with a special focus on how genomics and other emerging health technologies can provide more effective, personalised healthcare and deliver improvements in health for patients and citizens.  The PHG Foundation Toolkit supports users to conduct a health needs assessment (HNA) in relation to congenital disorders. HNA is a systematic way to identify unmet health needs in a population.  The aim of the toolkit is to improve the lives of people living with congenital disorders and reduce the burden of disease, by providing a framework for public health professionals to work against when devising a health needs assessment.

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EUROCAT-EUROPLAN Recommendations on policies to be considered for the primary prevention of congenital anomalies in National Plans and Strategies on Rare Diseases

Most congenital anomalies are rare and form an important group of Rare Diseases, for which EU Member States are developing National Plans. Primary prevention of congenital anomalies was identified as an important action in the field of Rare Diseases in the Communication from the Commission to the European Parliament, the Council, the European economic and social committee and the committee of the regions of 11th November 2008. This document aims at providing an outline of evidence-based policy actions for primary prevention of congenital anomalies. It does not seek to recommend specific policy options, rather to indicate the areas that Member States could target in their strategies for Primary Prevention of congenital anomalies. Within the scope of this document, primary prevention includes any evidence-based action aimed at reducing environmental risk factors for congenital anomalies and increasing protective environmental factors.

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EUROCAT Public Health Indicators

The EUROCAT Public Health Indicators summarise the epidemiological information from EUROCAT registries concerning prevalence, perinatal mortality and prenatal diagnosis. They are useful for communication of key information to policy makers.

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EUROCAT Special Report: Geographic Inequalities in Public Health Indicators Related to Congenital Anomalies

Paper 2: EUROCAT public health indicators for congenital anomalies in Europe

Global Burden of Disease

The Global Burden of Disease (GBD) approach endeavors to measure disability and death from a multitude of causes worldwide. It has grown over the past two decades years into an international consortium of more than 1,000 researchers, and its estimates are being updated annually. Publications cover estimates of all-cause mortality, deaths by cause, years of life lost, years lived with disability, disability-adjusted life years, prevalence and incidence, and specific estimates relating to congenital anomalies can be found in these publications, including geographic differences and trends over time. Note that GBD estimates cover livebirths only and do not include stillbirths or terminations of pregnancy for fetal anomaly, and therefore give only a partial picture of congenital anomalies.

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PUSH! Global Alliance

PUSH! Global Alliance is a platform for organisations to advance the greatest benefit to those affects by spina fifida and hydrocephalus.  Recognizing that knowledge is power, PUSH! has developed Global Report Cards for Spina Bifida and Hydrocephalus Prevention and Care. The report cards provide country and regional snapshots of indicators grouped by World Health Organization (WHO) regions. 

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Optimal serum and red blood cell folate concentrations in women of reproductive age for prevention of neural tube defects: Guideline

This guideline provides global, evidence-informed recommendations on blood folate concentrations in women of reproductive age for the prevention of neural tube defects in populations.

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The Story of Folic Acid Fortification

A new documentary on the history of folic acid by Birth Defects COUNT, CDC’s global initiative to reduce death and lifelong disability

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The Food Fortification Initiative (FFI)

The Food Fortification Initiative (FFI) is an international partnership working to improve health through fortification of industrially milled grain products: wheat flour, maize flour, and rice. The support provided includes: Communications resources on the benefits of fortification, Technical assistance in planning, implementing and monitoring fortification programs, Tracking progress at the country and global levels. FFI primarily support national stakeholders in the public, private and civic sectors. The nutrients most commonly used in post-harvest grain fortification are iron and folic acid, a B vitamin. Other nutrients that can be added are zinc, vitamin A, vitamin D, and other B vitamins such as niacin, thiamine, riboflavin and B 12.

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Smarter Futures

Smarter Futures is a partnership that provides technical support and training for flour millers, governmnet food control staff, and other stakeholders in Africa with regard to fortification of wheat and maize flour, and more recently rice, with vitamins and minerals.  Smarter Futures partners with the above mentioned Food Fortification Initiative (FFI), along with the International Federation for Spina Bifida and Hydrocephalus (IF), the Global Alliance for Improved Nutrition (GAIN), Nouryon, Helen Keller International, Muhlenchemie, Nutrition International, the World Food Programme, Buhler, and the Ministry of Foreign Affairs of the Netherlands.

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WHO toolkit for the care and support of people affected by complications associated with Zika virus

This toolkit has been developed to serve as a model guide, with the goal of enhancing country preparedness for Zika virus outbreaks. The toolkit is intended to provide a systems approach involving public health planners and managers so that the necessary infrastructure and resources can be identified and incorporated as needed, as well as technical and practical guidance for health care professionals and community workers. 
The toolkit includes three manuals to provide countries with tools to effectively recognize people affected by Zika virus and deliver comprehensive care and support:

  • Manual for public health planners and managers
  • Manual for health care professionals
  • Manual for community workers

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ZikaPLAN Tools

Educational tools include a free online course on Zika vector control as well as several video resources on Zika virus including; Congenital Zika Syndrome, pathogenesis of Zika virus infection, neurological manifestations, diagnostics innovation, current vs historical Zika virus, mathematical modelling to inform health policies, dissemination and communication and WEAR (wearable Aedes repellent technology).

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Online Zika Training

This eLearning course, available in English and Spanish, was made possible through support provided by the Bureau for Global Health, U.S. Agency for International Development, under the terms of an Interagency Agreement with the United States Centers for Disease Control and Prevention. The online resource consists of six training units: Introduction to Birth Defects, Lessons Learned from the Zika Outbreak 2015-2016, Zika - Case Definitions and Diagnostics Guidelines, Microcephaly and Congenital Zika Syndrome, and use of data for public health purposes.

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Assessment of Microcephaly in Context of Zika Virus

A practical guide on the assessment of microcephaly with links to Intergrowth21 Standards and resources on Zika Virus infection.

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How to use neonatal TORCH testing

This review provides an overview for health professionals of the pathogenesis, epidemiology and clinical consequences of congenital TORCH (Toxoplamosis, Other, Rubella, Cytomegalovirus, Herpes) infections in pregnancy and discusses the indications for and interpretation of, TORCH screens.

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The Teratology Society

To understand and prevent birth defects and disorders of developmental and reproductive origin, the Teratology Society promotes multi-disciplinary research and exchange of ideas; communicates information to health professionals, decision-makers, and the public; and provides education and training.  Their website includes: free lectures on teratology; information on conferences; and, a link to the American College of Toxicology/Teratology Society course.  The Birth Defects Research Journal is available for subscribed members; however, the website also contains freely available position papers as well as fact sheets and presentations.

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Paediatric cardiology services by telemedicine

Caring for children with heart defects remains a challenge worldwide. In developing countries, diagnoses are often late due to the lack of screening programmes and trained personnel. The problem is worsened by limited availability of hospital beds and the remoteness of rural communities from main urban centres where paediatric cardiology specialists are available. Telemedicine is being successfully used to overcome some of these challenges, for example in NE Brazil.

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Global Initiative for Children's Surgery (GICS) Network

The Global Initiative for Children's Surgery (GICS) Network strives to provide resources for low and middle income country (LMIC) surgeons, as well as high income country (HIC) surgeons wishing to work in low-resource environments.  The network was founded in 2010 as a clearinghouse for humanitarian work, aiming to eliminate duplicate efforts and work together with local surgeons and others toward common goals.

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Preconception Health

The US Centers for Disease Control and Prevention's website contains tips and tools regarding preconception health.  Preconception health and health care focus on taking steps now to protect the health of a baby in the future. However, preconception health is important for all women and men, whether or not they plan to have a baby one day.

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The National Preconception Health and Health Care (PCHHC) initiative is a public-private partnership of over 70 organizations focused on improving the health of young women and men and any children they may choose to have.  PCHHC's website contains preconception resources and training for professionals.

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This review provides an overview for health professionals of the pathogenesis, epidemiology and clinical consequences of congenital TORCH (Toxoplamosis, Other, Rubella, Cytomegalovirus, Herpes) infections in pregnancy and discusses the indications for, and interpretation of, TORCH screens