*   Upcoming webinar   *


Childhood Disability in Sub-Saharan Africa

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2 November 2023 | 13:30-15:00 UK time | Register

The Convention on the Rights of Persons with Disabilities sets out how disability stems from the interaction between physical and mental impairments and an unaccommodating environment, the biopsychosocial model of disability. Children with congenital anomalies in sub-Saharan Africa live with considerable stigma that leads to exclusion from participation in community life. They experience late and inadequate access to surgery which leads to higher levels of physical impairment, associated in turn with higher potential for stigma and exclusion, as well as lower survival than their peers in high income countries.
In this webinar, we bring together for discussion UNICEF’s data on child disability in Africa, the Global Burden of Disease project’s estimations of disability due to congenital anomaly in Africa and how this could be reduced by improving access to surgical services, and research on participation of children with disabilities due to congenitalanomalies in Africa.

Chairs
Professor Helen Dolk - Academic, Ulster University, United Kingdom
Dr Phyllis Kisa - Pediatric Surgeon, Makerere University College of Health Sciences, Paediatric Surgery Foundation, Kampala Uganda

Speakers 
Claudia Cappa - Senior Advisor for Statistics and Monitoring, Chief of the Child Protection and Development Unit in the Data and Analytics Section, UNICEF
Dr Dorothy Nakiwala - Managing Research Scientist, IHME, USA
Dr Samrawit Abebaw - Clinician and Research Coordinator, Hararghe Health Research, Haramaya University
Clare Bangirana - Director, Research and Knowledge Development, The AfriChild Centre, Uganda Agenda

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*Past Webinars* 

Advocacy for congenital disorders and rare diseases in Sub-Saharan Africa: an expert discussion

31 August 2023
Health advocacy relates to activities that help patients access and navigate healthcare, influence healthcare policies and create systemic change to address health inequalities. Rare diseases (RD) and congenital disorders (CD) are often overlooked and misunderstood, leading to delayed diagnosis/misdiagnosis, limited allocated resources, and inadequate support for those impacted. The majority of global deaths due to CD/RD in children under 5 are seen in low- and middle-income countries (LMIC), with those in Sub-Saharan Africa (SSA) facing the greatest risk. There is an urgent need to build capacity and expertise and to strengthen healthcare related to CD/RD. In this webinar, a panel of key advocacy stakeholders participate in a guided discussion regarding advocacy for rare diseases and congenital disorders in SSA.


Welcome
Chair: Ms Kelly du Plessis, Founder & CEO, Rare Diseases South Africa NPC, South Africa 

Introductions
Dr Yakob S Ahmed, Country Director, ReachAnother Foundation, Ethiopia
Ms Clare Ahabwe Bangirana, Director, Research and Knowledge Development, The AfriChild Centre, Uganda
Ms Esther Masika, Founder, Tunu Afrika, Kenya
Ms Karen Moss, Founder & Executive Director, STEPS Charity NPC, South Africa 

Panel discussion: advocacy for congenital disorders and rare diseases in SSA

Closing remarks

 

Congenital Heart Defects in Sub-Saharan African Countries

16 July 2023
Congenital heart defects (CHD) constitute almost a third of all congenital anomalies. Despite the challenge of underdiagnosis, sub-Saharan Africa has the highest birth prevalence of CHD in the world, and low- and middle-income countries contribute 77% of all global deaths due to CHD. Advances in pediatric cardiology and cardiac surgery, including the introduction of pulse oximetry for CHD screening and echocardiography for accurate diagnosis, have increased the survival rate of children with CHD by 95%. Unfortunately, such services are often lacking or prohibitively expensive in Africa where the majority of affected children (over 90%) do not receive appropriate care. The lack of diagnostic capacity results in high rates of missed and late CHD diagnoses, further limiting survival. In this webinar we discuss the challenges of CHD in sub-Saharan Africa and present recent prevalence, experience and best practice from the region, including the value of CHD screening with pulse oximetry in low resource, primary care settings.

Chair: Dr Caroline Osoro, Co-investigator, MiMBa (Malaria in Mothers and Babies), Center for Global Health Research at the Kenya Medical Research Institute 

Framework for congenital heart defects services in Africa | PTT 1.6 MB
Dr. Babar Hasan, Professor of Cardiology, Division of Cardio-thoracic Sciences, Sindh Institute of Urology and Transplantation (SIUT), Pakistan

Screening for Congenital Heart Defects in newborns and infants up to 12 months: Experience from Kenya | PTT coming soon
Kennedy Maube, Clinician and Study Coordinator, Kenya Medical Research Institute, Kenya

Newborn Pulse Oximetry screening, the “POPSICLe” study | PTT coming soon
Lizel Jacobs, Senior Research Consultant, Centre for Infectious Disease Epidemiology & Research (CIDER) at the University of Cape Town, South Africa

 

Community Screening Strategies to Improve Equitable Access in Diagnosis and Management of Birth Defects: Lessons from Low and Middle-Income Countries

11 May 2023
Congenital anomalies significantly contribute to under-5 mortality and morbidity in sub-Saharan Africa. Early identification allows for proper management and planning of intervention with possible improved outcomes. A recent systematic review on surgically correctable anomalies found birth defect screening and surveillance programs missing or only just developed in Low and lower-middle-Income countries. This webinar highlights the existing congenital anomaly screening programs, emphasising community screening strategies in low and middle-income countries.

Chair: Dr Caroline Osoro, Co-investigator, MiMBa (Malaria in Mothers and Babies), Center for Global Health Research at the Kenya Medical Research Institute 

Screening methods for congenital anomalies in low and lower-middle-income countries | PPT 307 KB
Dr. Justina O. Seyi-Olajide, Paediatric Surgeon, Department of Surgery, Lagos University Teaching, Hospital, Lagos, Nigeria

A birth defects service model for  low and low-middle income countries | PPT 24.5 MB
Prof. Anita Kar, Director, Birth Defects and Childhood Disability Research Centre, Pune, India

Hope Walks: Clubfoot Early Detection, Referral, and Treatment | PPT 11.6 MB
Erin Williams, Occupational Therapist & Global Health Professional, Clinical Program Officer- Hope Walks, USA

 

Neural Tube Defects in sub-Saharan Africa

12 October 2022
The prevalence of neural tube defects (NTD) in sub-Saharan Africa is high in comparison with other regions. Recent systematic reviews estimated the pooled prevalence of NTD in Africa at approximately 21 - 50 per 10,000 births with the highest rates in East Africa. Associations with folate supplementation and maternal environmental exposures have been noted. This webinar aims to bring together collaborators from across the region to discuss the epidemiology, prevention and management of NTD as well as addressing issues of access to care and patient support.

Chair: Dr Sylvia Roozen, Secretary General, International Federation for Spina Bifida & Hydrocephalus   

Spina bifida- ancient disease, modern challenges
Professor Graham Fieggen, Helen and Morris Mauerberger Professor and Head of Division University of Cape Town

Neural Tube Defect Surveillance in Botswana: 2014-2022 | PPT 2.4mb
Modiegi Diseko, Botswana Harvard AIDS Institute Partnership

Neural Tube Defects from a hospital-based birth defect surveillance in Kampala, Uganda | PPT 16mb
Dr Linda Barlow-Mosha, Makerere University-Johns Hopkins Research Collaboration, Kampala, Uganda

Identifying and addressing excess burden of neural tube defects from CHAMPS Ethiopia: Transforming data to action | PPT 5.7mb
Assistant Professor Lola Madrid, London School of Hygiene & Tropical Medicine and Haramaya University & Child Health and Mortality Prevention Surveillance Network (CHAMPS) Program, Ethiopia

Neural Tube Defects, its impact and proposed solution in Ethiopia | PPT 7.5mb
Dr Masresha Tessema, Food and Nutrition Research Directorate, Ethiopian Public Health Institute, Addis Ababa, Ethiopia

Teratogens and Pharmacovigilance

24 November 2021
This webinar focuses on teratogens and pharmacovigilance as part of the prevention of congenital anomalies. Representatives from the World Health Organization presented the Pharmacovigilance Pregnancy Exposure Registry, their initiative on how to improve monitoring drug safety among pregnant women on antiretrovirals, and the future initiatives for pharmacovigilance in pregnant women. Lessons learned in Botswana from the initial dolutegravir- neural tube defect findings, and communication of unexpected news. Efforts towards an African platform for congenital anomalies in Burkina Faso initially focusing on Zika and maternal infections were presented.

Chair: Dr Ushma Mehta, Co-PI of the UBHOMI BULE project in South Africa, Board Member of the South African Health Products Regulatory Agency (SAHPRA), Senior Researcher at Centre for Infectious Disease Epidemiology and Research, School of Public Health and Family Medicine, University of Cape Town, South Africa

The WHO Pregnancy exposure registry for monitoring medication safety and related actions for pharmacovigilance in pregnancy
Dr Marie-Eve Raguenaud, (Consultant) WHO-TDR
Dr Francoise Renaud, Technical Lead, Strategic Information and Analysis Unit, Global HIV, Hepatitis and STIs Programmes, World Health Organization, Geneva
Dr Noha Iessa, WHO Regulation and Prequalification Department  

Communicating the unexpected safety signal from the Tsepamo Study: the good, the bad and the ugly
Dr Rebecca Zash and Ms Modiegi Diseko, study co-coordinators for the Tsepamo Study, Botswana

Towards an African platform for congenital abnormalities and birth defects, with a focus on Zika and maternal infections
Dr Ali Sié, Centre de Recherche en Santé de Nouna/Institut NAtional de Santé Publique Burkina Faso, Heidelberg Institute of Global Health (HIGH)-Germany
Dr Eric Nébié, Centre de Recherche en Santé de Nouna/Institut NAtional de Santé Publique Burkina Faso
Prof. Bassirou Bonfoh, Centre Suisse de Recherches Scientifiques en Côte d'Ivoire (CSRS)
Prof. Thomas Jaenisch, Heidelberg Institute of Global Health (HIGH)-Germany, Center for Global Health, Colorado School of Public Health

Specialist service provision – Pediatric surgery

27 October 2021
This webinar focused on early detection and referral of children born with correctable life-threatening congenital anomalies, the current state and needs of pediatric surgery in sub-Saharan Africa, and efforts that can be made towards saving the lives of children born with congenital anomalies in resource poor settings.

Chair: Dr Emma Kalk, Centre for Infectious Disease Epidemiology & Research, University of Cape Town

Speakers: Prof. Emmanuel A. Ameh, Pediatric Surgeon, Division of Paediatric Surgery, National Hospital, Abuja, Nigeria
Presentation: Impact of Paediatric Surgery workforce gaps on surgically correctable congenital anomalies in SSA

Dr Phyllis Kisa, Pediatric Surgeon, Makerere University College of Health Sciences, Paediatric Surgery Foundation, Kampala Uganda
Presentation: Early identification of correctable life-threatening congenital anomalies and the Paediatric Emergency Surgical Course (PESC) 

Use of new technologies for congenital anomaly surveillance, diagnosis and care

29 September 2021
The advent of mobile health and of telemedicine has presented new opportunities to facilitate surveillance, diagnosis and care of congenital anomalies in low resource areas. This webinar will focus on some of the tools available, and provide an opportunity for discussion of further needs.

Chair: Dr Ayede Adejumoke Idowu, Pediatrician researcher, Department of Paediatrics, College of Medicine University of Ibadan, Nigeria

Speakers: Dr Leke Aminkeng, Ulster University United Kingdom.
Presentation: The Global Birth Defects App – an overview

Dr Ushma Mehta, University of Cape Town, South Africa.
Presentation: Modifying the GBD App for the Ubomi Buhle project

Dr Stephanie Dellicour, MiMBa project Liverpool School of Tropical Medicine, UK and Dr Caroline Osoro, MiMBa project Kenya.
Presentation:  An addition to the GBD App for the MiMBa project – a platform for expert case review

Dr Brian McCrossan, Paediatric Cardiologist,  United Kingdom
Presentation: Experience with telemedicine for diagnosis and care of congenital heart disease

Dr Bose Adebayo, Paediatric Cardiologist, Nigeria.
Presentation: Congenital heart disease in subSaharan Africa – opportunities for new technologies

Birth Defect Surveillance – Why and How, the African Experiences Part 2

25 August 2021
The Sub-Saharan Congenital Anomalies Network aims to improve the diagnosis and care of children with structural congenital anomalies and promote the identification of their causes for prevention by building an evidence base through surveillance, collaborative research and improving capacity.

There are few established birth defect surveillance systems in Africa, however there have been recent effort to build capacity building and establish surveillance in Africa. This 2-part webinar series focuses on the importance of surveillance and show case the experience to date of existing and emerging surveillance programs in Africa.

Chair | Dr Assumpta Muriithi- Medical Officer for Newborn Health, World Health Organization, Regional Office for Africa, Brazzaville, Republic of Congo

Panelists | Botswana: Prof Rebecca Zash, Assistant Professor at Harvard Medical School and Research Associate at the Botswana Harvard AIDS Institute Partnership

Ms. Modiegi Diseko, Tsepamo Study Coordinator, Harvard Medical School and the Botswana Harvard AIDS Institute Partnership
Presentation: Lessons learned from the Tsepamo Study, Botswana
Download document: Lessons learned from the Tsepamo Study, Botswana [PDF, 17mb]

Nigeria: Dr Adejumoke Idowu Ayede, Senior Lecturer/ Consultant Paediatrician/Neonatologist Department of Paediatrics, College of Medicine, University of Ibadan and University College Hospital, Ibadan, Nigeria
Presentation: Establishing a Birth Defect Surveillance: The Ibadan Nigeria Experience
Download document: Establishing a Birth Defect Surveillance: the Ibadan Nigeria Experience [PDF, 865kb]

Malawi: Dr George Bello, HIV Epidemiologist Epidemiology Unit, Ministry of Health
Presentation: Establishing a surveillance system: The Malawi experience
Download document: Establishing a surveillance system: the Malawi Experience [PDF, 193kb]

Uganda: Dr Joseph Akuze, Research Associate at the Makerere University School of Public Health
Presentation: Measuring stillbirths and neonatal deaths in the DHS
Download document: Measuring stillbirths and neonatal deaths in the DHS [PDF, 8mb]

 

Addressing congenital anomalies and triple surveillance on the path to meet SDG3 targets

28 July 2021
The Sustainable Development Goal 3 (SDG-3) aspires to ensure health and well-being for all with all countries aiming to reduce neonatal mortality end and end preventable deaths of newborns and children under 5 years of age by 2030. Congenital anomalies cause death and disability, as well as affect families and communities throughout the lifespan. Meeting this challenge effectively requires addressing both its roots and the branches -- the causes as well as the outcomes of congenital anomalies. Triple surveillance and triple action provide a framework to concurrently understand and address risk factors, occurrence, and health outcomes.

This webinar focuses on:

1. An update of the burden and causes of congenital anomalies and their contribution to child mortality.
2. Current programs for newborn care that include prevention and care for CA.
3. The benefits of Triple surveillance with the overall goal to prevent what can be prevented and treat optimally what cannot.

Chair: Professor Philippa Musoke, Executive Director, Makerere University - Johns Hopkins University Research Collaboration, PI of Hospital-based Birth Defect Surveillance Program in Kampala, Uganda

Speakers:
Dr Ornella Lincetto, Senior Medical Officer Newborn Health, Department of Maternal, Newborn, Child and Adolescent Health, World Health Organization, Geneva Switzerland.
Presentation: Meeting SDG3 by tackling child mortality due to Congenital Anomaly, with a focus on sub-Saharan Africa


Dr Lorenzo Botto, Professor of Pediatrics and Medical Genetics, University of Utah School of Medicine; Executive Committee Member of International Clearinghouse for Birth Defect Surveillance and Research.
Presentation: Triple surveillance and action: An integrated approach to saving lives and reducing health inequalities

sSCAN: Birth Defect Surveillance – Why and How, the African Experiences Part 1

30 June 2021
There are few established birth defect surveillance systems in Africa. However, recent capacity building efforts have been made by the World Health Organization, International Center for Birth Defect Surveillance and Research, and the US Centers for Disease Control and Prevention. This two-part webinar series will focus on the importance of surveillance and show case the experience to date of existing and emerging surveillance programs in Africa.

Chair of Session: Linda Barlow-Mosha, Senior Investigator Makerere-University Johns Hopkins University Research Collaboration, Kampala Uganda, PI of Seed Project to Establish an African Network for Congenital Anomalies (funded by Medical Research Council- UKRI), Co-PI of Birth Defect Surveillance Program in Kampala Uganda

Presenters: Ushma Mehta, is the Co-PI of the UBHOMI BULE project in South Africa, Board Member of the South African Health Products Regulatory Agency (SAHPRA), Senior Researcher at Centre for Infectious Disease Epidemiology and Research, School of Public Health and Family Medicine, University of Cape Town, South Africa.
Presentation: Overview of UBOMI BUHLE: The National Pregnancy Exposure Registry Project

Helen Malherbe is a Director of Rare Diseases South Africa (RDSA) and heads up the research and epidemiology portfolio of this registered NPO. RDSA works to ensure that people living with rare disease and congenital disorders experience better recognition and support, improved health services, and a better life overall.
Presentation: Birth Defect Surveillance: South Africa

Leke Aminkeng is a Co-investigator for African Congenital Anomalies Network, Research Associate at Ulster University in UK, Co-founder of the Health Research Foundation in Buea, Cameroon.
Presentation: Cameroon Registry of Congenital Anomaly Surveillance (CARECAS) progress update

Daniel Mwanja Mumpe is the Program Manager of Birth Defect Surveillance Program in Kampala Uganda at Makerere University- Johns Hopkins University Research Collaboration.
Presentation: Hospital-based birth defects surveillance in Kampala, Uganda