Overcoming Barriers to Birth Defect Diagnosis and Management in sub-Saharan Africa28 November 2024
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Chair | Dr Samrawit Tegene - Hararghe Health Research & CHAMPS Ethiopia, Ethiopia
Speakers
Dr Justina O. Seyi-Olajide - Paediatric Surgeon, Department of Surgery, Lagos University Teaching Hospital, Nigeria
Joyce Namale-Matovu - Research Midwife, Makerere University Johns Hopkins University Research Collaboration, Uganda
Dr Audrey Chepkemoi - Paediatrician and Researcher, Moi University and Teaching Hospital, Kenya
Associate Professor Tadesse Gure - Maternal Fetal Medicine Specialist, Haramaya University, Ethiopia
Congenital Infections associated with Congenital Anomalies in sub-Saharan Africa25 July 2024 In utero exposure to certain infections is an important cause of non-genetic congenital disorders. Depending on the teratogen and timing of infection, such exposure can result in anatomical malformations, disrupted organogenesis and development, and fetal/neonatal death. Some implicated maternal infections are preventable (e.g., rubella via vaccination) or treatable (e.g., syphilis via antenatal screening and treatment). The effects of others can be diagnosed by antenatal ultrasound (e.g., Zika virus, CMV). This webinar will discuss the clinical and epidemiological features of congenital infections associated with congenital anomalies in relevant to sub-Saharan Africa, including general overviews and country-specific data.
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Chair | Professor Philipa Musoke - Director, Makerere University-Johns Hopkins University Research Collaboration, Uganda
Speakers
Professor Lavinia Schuler-Faccini - Medical Genetics, Federal University of Rio Grande do Sul & Hospital de Clinicas de Porto Alegre, Brazil
Dr Tendesayi Kufa-Chakezha - Senior Epidemiologist, Centre for HIV and STIs, National Institute for Communicable Diseases, South Africa
Associate Professor Juliet Mwanga-Amumpaire - Mbarara University of Science and Technology & Epicentre Mbarara Research Centre, Uganda
Dr Kerrigan McCarthy - Pathologist, Centre for Vaccines and Immunology, National Institute for Communicable Diseases, South Africa
Orofacial clefts in Sub-Saharan Africa: Epidemiology, Care and Prevention30 may 2024 Africa, with a population of 1.4 billion as of 2021, is the second-most populous continent. The United Nation Statistics Division has subdivided the African continent into North Africa and sub-Saharan Africa. Orofacial clefts (OFC) are the commonest congenital anomalies in the head and neck region with a worldwide prevalence of 1 in 700 live births. There are varying reports of orofacial clefts in African countries; Butali et al. reported a prevalence of 0.5 per 1000 in Nigeria. Eshete et al. reported an incidence of 0.44/1000 live births in Ethiopia. Dreise, Galiwango, and Hodges reported an incidence of 0.73 per 1000. The management of children born with orofacial clefts starts prenatally and continues to adulthood. It requires the involvement of many professionals (psychologists, nutritionists, reconstructive surgeons, ENT surgeons, speech therapists, dentists, orthodontists to mentions some. There are a lot of barriers to the of care children born with orofacial clefts in SSA to mention few: lack of hospital resources, lack of trained manpower and lack of public awareness. The parents/caregivers must travel a long distance to receive cleft care for their children. Malnutrition and infectious diseases like malaria and TB further complicates the care of these children. Educating the communities, providing training and hospital resources can improve the care
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Chair | Associate Professor Helen Malherbe - Director of Research & Epidemiology, RareDiseases South Africa
Speakers
Professor Mekonen Eshete - Plastic & Reconstructive Surgery, Addis Ababa University, Ethiopia
Ros Lentin - Speech Therapist, Groote Schuur Hospital, South Africa
Dr Thiorona Naicker - Paediatrician, Medical Genetics, University of KwaZulu-Natal, South Africa
Dr Azeez Alade - Dental Surgeon and PhD candidate, University of Iowa, USA
Childhood Disability in Sub-Saharan Africa2 November 2023 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.
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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
Advocacy for congenital disorders and rare diseases in Sub-Saharan Africa: an expert discussion31 August 2023 |
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
Congenital Heart Defects in Sub-Saharan African Countries16 July 2023 |
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 Countries11 May 2023 |
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 Africa12 October 2022 |
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 Pharmacovigilance24 November 2021 |
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 surgery27 October 2021 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 care29 September 2021 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 225 August 2021 |
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 targets28 July 2021 |
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 130 June 2021 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