The 77th World Health Assembly Resolution 2024 addresses the diagnosis, management and long-term care of children with birth defects
17 September 2024
Resolution WHA77.5, of 1 June 2024 “Accelerating progress towards reducing maternal, newborn and child mortality in order to achieve Sustainable Development Goal targets 3.1 and 3.2”
invites Member States “to consider implementing a universal newborn screening programme including comprehensive birth defect screening, including specific needs and considerations for diagnosis, management and long-term care of children with birth defects.”
This is a most welcome and major step forward in preventing mortality and child disability relating to birth defects in Low and Middle Income Countries.
New feedback on using the Global Birth Defects app in South Africa
5 June 2024
Watch here Feedback • Global Birth Defects (tghn.org)
Nursing staff, Siviwe Hendrick, Lumka Vicks and Anesipho Dlamenzi at a primary level, Gugulethu Midwife Obstertric Unit in South Africa, discuss their experiences of using the Global Birth Defects App.
Khanyisa Mandondo, a nurse at Ubomi Buhle, who regularly uses the Global Birth Defects App to record cases, discusses how easy it is to download and use the App.
If you would like to add a feedback video regarding your use of the Global Birth Defects App, please contact globalbirthdefects@tghn.org
Launch of the RELAMC Website
26 July 2023
A launch event was held on July 3, 2023 for the RELAMC website www.relamc.org
RELAMC is the Latin American network for congenital anomaly surveillance.
The website describes the network and the member registries, allows the user to obtain publicly available prevalence data tables, and provides the platform for data submission for member registries.
The launch event was co-organised by RELAMC and the Coordenação-Geral de Informações e Análises Epidemiológicas, Ministério da Saúde, Brazil. Speakers included Ieda Orioli, Theresa Diaz, Helen Dolk, Boris Groisman, Guillermo Macías, Marli Souza Rocha, Jorge López Camelo and Ignacio Zarante.
Congratulations to RELAMC for this milestone!
International Conference for Birth Defects in Developing Countries, Chile, March 2023
3 March 2023
Caroline Osoro (pictured) talked to new users about the use of the Global Birth Defects app, and how the MiMBA project has added an expert review platform which is now available to all users.
Emma Kalk, Caroline Osoro, Robert Serunjogi and Modiegi Diseko (pictured) represented the new SubSaharan Congenital Anomalies Network (sSCAN).
BRAZIL CONDUCTS NATIONWIDE TRAINING USING THE GLOBAL BIRTH DEFECTS APP
29 November 2022
Congenital anomalies are now the leading cause of infant death in Brazil. To tackle this problem, the public health focus must be on preventing congenital anomalies where possible, and providing excellent care to promote survival and reduce disability. The Brazilian Ministry of Health is embarking on a nationwide training program of workshops to improve the diagnosis and reporting of congenital anomalies to the health surveillance system, working in partnership with birth defect experts such as Prof Lavinia Schuler-Faccini. These workshops use the Global Birth Defects app (Um guia para instalar e utilizar o aplicativo Global Birth Defects • Global Birth Defects (tghn.org), as well as other resources that have been created to support birth defect diagnosis, prevention and care [Congenital Anomalies - Integrated Health Surveillance Platform - Ministry of Health (saude.gov.br)].
sSCAN Seminar - Neural Tube Defects in sub-Saharan Africa
COVID-19 and Congenital Anomalies
9 March 2022
New methodological publication
Most pregnancy research related to the COVID-19 pandemic, whether the disease, its treatment, or vaccines, has concerned second and third trimester exposures. This paper investigates how we can generate more high-quality evidence about the adverse effects of periconceptional and first trimester exposures, specifically in relation to congenital anomalies.
March 3 - World Birth Defects Day
3 March 2022
All over the world, organisations and individuals are coming together to show their support for preventing deaths and improving lives affected by birth defects.
More than 5 million babies are born each year with birth defects (congenital anomalies), the vast majority in low and middle income countries.
If we are to meet the sustainable development goals by 2030, in particular in relation to ending preventable deaths of newborns and children under five years of age (sdg3.2), and achieving universal health coverage and access to high quality essential health care services (sdg3.8), then each country must have a clear strategy to address birth defects.
ask your ministry of health, what is its strategy to:
- Prevent birth defects
- Improve diagnosis and care of all individuals with any birth defect and related disabilities
- Increase knowledge of the prevalence and causes of birth defects through epidemiologic and basic research
On the global birth defects website, we are happy to offer you an inventory of many freely available sources of information. If you would like to add others, please contact us at globalbirthdefects@tghn.org
Launch of the website of the new subSaharan African Congenital Anomaly Network (sSCAN)
23 November 2021
Home • Sub-Saharan Congenital Anomalies Network (tghn.org)
We are happy to announce the launch of the sSCAN network website, at the time of the fifth sSCAN webinar. The aim of the sSCAN network is to improve the diagnosis of congenital anomalies and care for affected children and families, and promote the identification and prevention of their causes, by building an evidence base through surveillance and research, improving capacity for collaborative research, and paving an impact pathway on policy and practice.
This week’s webinar (Wednesday 24 Nov at 2 pm UK time) will focus on teratogens and pharmacovigilance. All are welcome to register for this free webinar, hosted by the Global Health Network.
Standards for improving the quality of care for small and sick newborns in health facilities
27 August 2021
The World Health Organisation has published in 2020 new revised standards for improving quality care for small and sick newborns in health facilities. They include new standards of care for congenital anomalies. To hear more about it, listen to sSCAN’s second webinar, where Dr Ornella Lincetto of the World Health Organisation explains this important development here.
To read more about it: Standards for improving the quality of care for small and sick newborns in health facilities (who.int)
Monthly webinars of the subSaharan African Network for Congenital Anomalies
24 August 2021
These are held on the last Wednesday of each month, so reserve in your diary! You can see the recordings of past webinars on sSCAN • Global Birth Defects (tghn.org)
Upcoming webinar
17 August 2021
Seminar Annoucement
21 July 2021
Welcoming new and existing users to Global Birth Defects!
9 July 2021
Up to June 2021, we have more than 2500 registered users of our site. In the month of June 2021 alone, our users came from 49 countries, including 11 in Africa, 9 in Latin America and 12 in Asia. We welcome your suggestions and additions, just email us at globalbirthdefects@tghn.org.
Congenital Anomalies in SubSaharan Africa: Surveillance, Prevention and Care.
29 June 2021
The first of a series of eight webinars, hosted by the Global Health Network, is to be held on 30 June at 2 pm UK time (GMT+1), organised by the newly formed SubSaharan African Network for Congenital Anomalies. The formation of the network has been funded by a seed grant from the UKRI-Medical Research Council UK.
The first webinar will relate the experiences of birth defect surveillance in three countries – South African, Uganda and Cameroon.
Brazilian Ministry of Health launches pilot project for active surveillance of congenital anomalies
3 March 2021
To mark World Birth Defects Day on 3 March 2021, the Health Surveillance Secretariat (SVS) of the Brazilian Ministry of Health focused on raising awareness of congenital anomalies.
A pilot project seeking to raise awareness and to train the teams involved in identifying and coding congenital anomalies was announced. The project is a partnership of various health care and research institutions located in strategic cities across the state of Rio Grande do Sul.
Through the project, the impact of educational strategies on the quality of the register of congenital anomalies will be assessed, providing more reliable epidemiological indicators.
It is expected that further surveillance projects will be rolled out in different regions of Brazil in the future, with a view to creating effective public policies for the prevention, diagnosis, and treatment of the more than 600 types of congenital anomalies.
The Ministry of Health also promoted a key global webinar attended by health and research professionals as well as the public, which addressed the challenges and perspectives for surveillance of congenital anomalies in Latin America and worldwide.
Additionally, the book, “Health Brazil: priority congenital anomalies for surveillance at birth” was launched. It will be released in Portuguese, English, and Spanish, and will be available on the Integrated Health Surveillance Platform.
An epidemiological bulletin was also launched with updated information on congenital anomalies in Brazil, which is available here.
Registry of newborns of covid19 positive mothers in Latin America
March 2021
Previous data about MERS and SARS infection outbreaks (belonging to the same Coronavirus family as SARS-CoV-2) report that pregnant women who contracted the virus did not exhibit more severe symptoms than non-pregnant women did. To date, there have been no reports of a measurable teratogenic effect. However, more research is needed. This project will use the networks of the Latin American Collaborative Study of Congenital Malformations (ECLAMC) and the Latin American Network of Congenital Malformations (ReLAMC). We are constructing a registry of births whose mothers had SARS-CoV-2 infection (COVID-19) during pregnancy in Latin America. In the first instance, the purpose is to identify any increases in the frequency of adverse events that may relate to the infection to plan later specific studies. A descriptive transversal epidemiological approach will be conducted through an online form that will be voluntarily completed by the project participants.
To fill the registry form, click this link: Open reporting of births in pregnant women infected with CoronaVirus in Latin America.
Contact: Jorge Lopez Camelo jslc@eclamc.org
Global Birth Defects App wins major digital health award
December 2020
We are delighted that our Global Birth Defects App, which is available to download now, has recently achieved a Merit Award in the 4th Commonwealth Digital Health Awards 2020 in the Maternal and Neonatal Health category.
DLeke Aminkeng, who presented the App to the award panel along with Katy Karnell, commented: “It is wonderful to have our App recognised at such a prestigious Awards ceremony, which we hope will help to spread news of the App to even more people."
The App is aimed at healthcare professionals working in congenital anomaly surveillance and research in lower resource countries and it helps them to code and categorise birth defects, allowing for better recognition, description and coding of congenital anomalies, which may otherwise go undocumented or unmonitored.
For more information about the app or to download visit: The Birth Defects App
New Voices
Come listen to the voices and personal experiences of people affected by birth defects. GBD has just added a new section in our comprehensive resource inventory called "Voices." Here you will find videos featuring a variety of people and families from around the world who have stories to inform and inspire.
Engage with us on World Birth Defects Day
February 19, 2020
Join us on March 3, 2020 at 11AM GMT for an interactive webinar to mark World Birth Defects Day (#manybirthdefects1voice). We will discuss your feedback and questions as well as demonstrate the app’s capabilities.
It is World Folic Acid Awareness Week
January 7, 2020
We wish it were no longer necessary to repeat the phrase, “Take folic acid before becoming pregnant,” but regrettably, this knowledge and practice should continue to be widely promoted. Folic acid is key in reducing the risk of children born with neural tube defects or hydrocephalus.
Construyendo una vigilancia robusta en toda América Latina
December 11, 2019
Dos importantes redes colaborativas sobre el estudio de anomalías congénitas en América Latina se reunieron en noviembre pasado.
La 4a Reunión de la Red Latinoamericana de Malformaciones Congénitas (ReLAMC) se celebró junto con la 51a Reunión Anual de Estudio Colaborativo Latinoamericano de Malformaciones Congénitas (ECLAMC), en Caxias do Sul, Brasil, del 3 al 8 de noviembre de 2019. Registro miembros, profesionales de la salud y estudiantes vinieron de toda América Latina, bien como de Europa y Estados Unidos.
Building robust surveillance throughout Latin America
December 11, 2019
Two prominent networks that study congenital anomalies in Latin America met last November.
The 4th Meeting of the Latin American Network of Congenital Malformations (ReLAMC) was held in conjunction with the 51st Annual Meeting of Latin American Collaborative Study of Congenital Malformations (ECLAMC), in Caxias do Sul, Brazil from November 3-8, 2019. Registry members, health professionals, and students came from throughout Latin America, the USA, and Europe.
Free Birth Defects Training App Goes Live
October 30, 2019
Professor Helen Dolk is on the go, taking the Global Birth Defects app to our partners and interested health care providers in Latin America. She is one of the leads on our GBD initiative and a champion for mainstreaming birth defects surveillance into wider surveillance efforts. This week she was in Cali, Colombia at the ZikaPLAN consortium meeting where she presented...
Baby's First Test
December 5, 2019
In our effort to constantly update our comprehensive resource inventory, we have just added into our section, Information for parents (click and scroll to the bottom of this page), links to the United State's clearinghouse for newborn screening information. This...
On the Go
October 24, 2019
Professor Helen Dolk is on the go, taking the Global Birth Defects app to our partners and interested health care providers in Latin America. She is one of the leads on our GBD initiative and a champion for mainstreaming birth defects surveillance into wider surveillance efforts. This week she was in Cali, Colombia at the ZikaPLAN consortium meeting where she presented...
New Surveillance Network in Latin America—ReLAMC—Building Strength
October 22, 2019
Zika surged onto the world stage in 2015 in Brazil and within the next two years, hundreds of thousands of people had been infected and more than 3,500 babies were estimated to have experienced Zika-related birth defects in Latin America. By 2016, WHO had declared a public health emergency. Now, four years later, the epidemic has waned but still serves as a stark reminder of the critical role birth defects surveillance plays in the prevention and containment of disease. In response to the need for better surveillance that the Zika epidemic highlighted...
Dr Leke Aminkeng Demonstrates New Free App at ICBDSR Meeting
September 24, 2019
Our Global Birth Defects Research Fellow, Dr Leke Aminkeng, returned from Bratislava, Slovakia last week invigorated. Why? Because his presentation about our Birth Defects App was met with great enthusiasm and interest from conference participants.
New Resource Added
August 12, 2019
We are always updating and expanding our comprehensive resource inventory to ensure it contains the tools you seek in order to develop or enhance your local surveillance system. Today, under our Registration Manuals/Software section, we added a downloadable curriculum for health personnel on perinatal infections transmitted by the mother to her infant.
What tools exist in diagnosis and coding?
June 20, 2019
Our Global Birth Defects initiative has gathered into its resource inventory essential atlases, manuals, and instructional tools under our Diagnosis and Coding section. One of the ready-to-use instructional manuals—a guide for the description and classification of congenital limb defects—comes from a European surveillance network.
Phase I testing begins
June 3, 2019
Phase I testing of our App began June 1 and continues throughout this month. During this phase, expert clinician reviewers will download, register, and use the Basic Version of the App. These reviewers will provide feedback through a questionnaire that asks about the functionality, clinical content, and the utility of the App.
Have You Heard of ECLAMC?
May 28, 2019
Have you heard about the birth surveillance network in Latin America called ECLAMC? ECLAMC stands for Estudio Colaborative Latino Americano de Malformaciones Congénitas—Latin American Collaborative Study of Congenital Malformations. Their network of 35 hospitals voluntarily register infants with malformations with the aim of the prevention of birth defects through research.
Looking for Resources?
May 15, 2019
Did you know that our website contains a comprehensive resource inventory for improving congenital anomaly surveillance in low-resource areas? We have a section dedicated to registration manuals and software.
Teratology Webinar April 10, 2019
March 28, 2019
Webinar: "Communicating with Others: What Is a Teratogen?" featuring Dr. Anthony Scialli - April 10 at 11 am Eastern. The webinar is hosted by the Teratology Society in collaboration with the American College of Toxicology, Organization of Teratology Information Specialists, and National Birth Defects Prevention Network. This webinar is free and open to anyone, but registration is required.
Workshops Promote Zest for Fun
February 28, 2019
The newly launched Global Birth Defects website has been funded by ZikaPLAN. We are therefore happy to mark World Birth Defects Day by highlighting actions to address birth defects caused by the Zika virus. Today, we throw the spotlight on the outreach activities of the Zika Engagement and Support Team (ZEST).
World Birth Defects Day is fast approaching!
February 25, 2019
Join the World Birth Defects Day Twitter Chat on Friday, March 1 at 11am. It is a bilingual chat hosted by the March of Dimes. On Friday, 12 questions will be tweeted out under the hashtag #ManyBirthDefects1Voice and #WorldBDday. Tweet your responses. Find more information at the World Birth Defects Day website.
Meeting of The International Committee for Congenital Anomaly Surveillance Tools
January 21-22, 2018
Our team of public health and clinical experts have been meeting to finalise the content that will be on the App we're developing. This App is intended for the description and coding of birth defects in areas and regions of low-resources.
The launch of the Global Birth Defects Website on 12 December 2018!
December 13, 2018
Welcome. See our inventory of birth defect surveillance tools and resources.