ESPE2023 Poster Category 1 Adrenals and HPA Axis (40 abstracts)
The @MATES4Kids Movement: Reducing Preventable Mortality Associated with Congenital Adrenal Hyperplasia (CAH) by 30% by 2030
Kate Armstrong 1,2 , Carmen Auste 3 , Raúl Calzada León 4 , Jean-Pierre Chanoine 5,6 , Hedi L. Claahsen 7 , Maria E. Craig 8,9 , Asma Deeb 10 , Muhammad Yazid Jalaludin 11 , Dina Matos 12 , Marika Mayrdorfer-Muhr 13,14 , Johanna Meschede 13 , Aman Pulungan 15 , Sumudu N. Seneviratne 16 , Diane E.J. Stafford 17,18 , Paola Duran Ventura 19 , Sirisha K. Boddu 20 , Navoda Atapattu 21 , Jamal Raza 22,23,24 , Mohsina Ibrahim 22 & Salwa Musa 25
1CLAN (Caring & Living As Neighbours), Sydney, Australia. 2Torrens University, Adelaide, Australia. 3Cancer Warriors Foundation, Manila, Philippines. 4National Institute for Pediatrics, Mexico City, Mexico. 5British Columbia Children’s Hospital, Vancouver, Canada. 6University of British Columbia, Vancouver, Canada. 7Radboudumc Amalia Children’s Hospital, Nijmegen, Netherlands. 8Children’s Hospital at Westmead, Sydney, Australia. 9University of New South Wales, Sydney, Australia. 10Sheikh Shakhbout Medical City, Abu Dhabi, UAE. 11Faculty of Medicine, Universiti Malaya, Kuala Lumpur, Malaysia. 12CARES Foundation, New Jersey, USA. 13CAH International, Hamburg, Germany. 14Netzwerk AGS- Österreich, Vienna, Austria. 15Faculty of Medicine, Universitas Indonesia, Jakarta, Indonesia. 16Centre for Complex Hormonal Disorders, Faculty of Medicine, University of Colombo, Colombo, Sri Lanka. 17Stanford University School of Medicine, Palo Alto, USA. 18GPED (Global Pediatric Endocrinology and Diabetes), Vancouver, Canada. 19Fundacion Cardioinfantil-IC, Asociacion colegio Colombiano de endocrinología pediátrica ACCEP, Bogota, Colombia. 20Rainbow Children's Hospital, Hyderabad, India. 21Lady Ridgeway Hospital, Colombo, Sri Lanka. 22National Institute of Child Health (NICH), Karachi, Pakistan. 23Pakistan Pediatric Association, Society of Pediatric Endocrinology Pakistan (SPED), Karachi, Pakistan. 24South Asian Pediatric Association (SAPA), Karachi, Pakistan. 25University of Khartoum, Khartoum, Sudan
Background: Children living with paediatric endocrine conditions in resource-poor countries experience inequitable rates of preventable mortality and morbidity. Reducing preventable mortality will help member states committed to delivering on the United Nations’ Sustainable Development Goals 3.2.1, 3.2.2 and 3.4. CLAN (Caring & Living As Neighbours) has been improving health outcomes for children living with CAH in resource poor countries since 2004, through a rights-based, community development approach focusing collaborative action on five pillars: 1. Affordable access to medicines and equipment; 2. Education, research and advocacy; 3. Optimal medical management; 4. Family support groups; and 5. Reducing financial burdens on families. CLAN founded the @MATES4Kids movement in 2021, bringing together a broad range of individuals and organisations committed to practical actions to reduce preventable mortality from CAH. @MATES4Kids’ objectives are to: rapidly scale action on pillar 1 by improving access to essential medicines; strengthen CAH Communities; and increase Newborn Screening.
Aim: To engage paediatric endocrinologists from the six World Health Organisation (WHO) regions (African, Americas, Eastern Mediterranean, European, South East Asian and Western Pacific) in the @MATES4Kids movement.
Methods: In 2022, @MATES4Kids elevated this issue to WHO, proposing a strategic approach to improving access to hydrocortisone and fludrocortisone tablets. An inaugural CAH@MATES4Kids Meeting co-chaired by CLAN and GPED (Global Pediatric Endocrinology and Diabetes) convened at IMPE (International Meeting of Pediatric Endocrinology) 2023, allowing interested stakeholders to share experiences, identify priorities and agree future strategies.
Results: IMPE 2023 facilitated communication between global and regional paediatric endocrine societies and CAH@MATES4Kids agreed an implementation plan for strategic action in the six WHO regions utilising the Knowledge To Action Framework. Tools developed to aid identification of priorities, guide implementation, monitor progress and evaluate outcomes include: CLAN Snapshot Survey; CAH Health Needs Assessment; CAH Equity Scorecard; Child Health Equity Checklist Count (CHECC) Scorecard and @MATES4Kids Monitoring Indicators. Champions for each WHO Region and a Community of Practice will facilitate a Continuous Quality Improvement approach to critical action with an agreed timeline. Drug / monetary donations from Direct Relief, GPED, CARES Foundation, the international CAH Community and CLAN have already supported CAH Communities in Ukraine, Sri Lanka and Zimbabwe.
Discussion: Reducing preventable mortality associated with CAH will require innovative, sustained, multistakeholder and multidisciplinary efforts. Paediatric endocrinologists can play a key role advancing this agenda on the road to 2030.
Article tools
My recent searches
My recently viewed abstracts
Authors
ESPE Abstracts
© Bioscientifica 2024 |
Privacy policy |
Cookie settings
BiosciAbstracts
Bioscientifica Abstracts is the gateway to a series of products that provide a permanent, citable record of abstracts for biomedical and life science conferences.
Find out more