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.
United Nations Convention on the Rights of Persons with Disabilities
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.
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.
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:
- Triple surveillance: a proposal for an integrated strategy to support and accelerate birth defect prevention
- From cause to care: Triple surveillance for better outcomes in birth defects and rare diseases
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
Public Health Genomics Toolkit for Health Needs Assessment in Congenital Disorders
The 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.
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.
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.
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.
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.
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
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.
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
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).
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.
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.
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.
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.
Global Paediatric Surgery Network
The Global Paediatric Surgery Network (GPSN) serves as a clearinghouse for volunteer work performed by pediatric surgeons around the world. In addition, there are extensive resources not only for pediatric surgeons in low- and middle-income countries, but for volunteer pediatric surgeons as well. Finally, the GPSN Collaborative is a group of pediatric surgeons working to improve the surgical care of children.