Improving birth defect surveillance worldwide

News

World Birth Defects Day

3 March 2026

We join the world today, March 3, 2026, in raising awareness for all birth defects “Many Birth Defects, One Voice”. World Birth Defects day aims to mobilize resources and commitment to improve birth defects surveillance, research, prevention and care. https://www.worldbirthdefectsday.org/

CULAN Seeks to Strengthen National Surveillance and Multidisciplinary Care for Congenital Upper Limb Anomalies

 3 March 2026

The Congenital Upper Limb Anomaly Network (CULAN) seeks to advance national capacity for surveillance, research, and multidisciplinary care for children born with congenital upper limb anomalies (CULA) in Nigeria. The initiative, led by Professor Afieharo Michael (Coordinator and Principal Investigator), is supported by a grant from the American Foundation for Surgery of the Hand, with Professor Andrea Bauer serving as project sponsor.

A major milestone was the successful two-day Train-the-Trainers workshop held on 24–25 February 2026, focused on the rollout of the Global Birth Defects Description and Coding (GBDDC) mobile application. Developed by Professor Helen Dolk (GBDDC App Team Lead) and her team which includes Mr. Utibe Ebong, the digital tool supports accurate case identification, classification, and real-time reporting of congenital anomalies. Participants received hands-on training in data entry, quality assurance, ethical considerations, and cascade training methodologies, alongside the development of a structured plan to train midwives as frontline case identifiers.

CULAN’s collaborative team includes Dr. Oluwatobi Abass (Team Lead, Ahmadu Bello University Teaching Hospital, Zaria), Professor Olayinka Olawoye (University of Ibadan/University College Hospital), Professor Abdulrasheed Ibrahim (ABUTH), and Professor Odunayo Oluwatosin (Head of Monitoring and Evaluation). The project, which is being piloted in Ibadan and Zaria, will bring together orthopaedic surgeons, plastic surgeons, physiotherapists, radiologists, public health experts and other stakeholders to strengthen referral pathways and ensure comprehensive care.

Through digital innovation and coordinated specialist collaboration, CULAN is laying the foundation for improved access to equitable, high-quality care across Nigeria, with a vision for regional expansion across Africa.

A collection of guides and materials to assist with the diagnosis and surveillance of congenital anomalies for health research professionals working in birth defects surveillance systems, public health and pregnancy cohort studies.

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).