The IDF Life for a Child Program has a very active research agenda in aspects of diabetes in young people in less-resourced countries:
• Incidence, prevalence and mortality
• Types of diabetes occurring
• Access to diabetes care
• Cost of diabetes care
• Impact of interventions
• Care-giving and psychological impacts
Partners include many of the recipient centres supported by LFAC, as well as researchers in various leading institutions such as:
• University of Pittsburgh
• University of Sydney
• University of Florida
• Children’s Hospital Oakland Research Institute
• Children’s Hospital Eastern Ontario
• University of Minnesota
• Barbara Davis Center
The following information gives the list of published works, with links.
Part A - Published papers by IDF LFAC (most recent first)
Part B - Formal evaluation by London School of Hygiene and Tropical Medicine
Part C - Abstracts of IDF LFAC work that is underway
Part D - Published papers by others referencing IDF LFAC
Part A - Published Papers
Duarte Gómez E, Gregory GA, Castrati Nostas M, Middlehurst AC, Jenkins AJ, Ogle GD. Incidence and mortality rates and clinical characteristics of type 1 diabetes among children and young adults in Cochabamba, Bolivia. J Diabetes Res 2017 (accepted for publication)
Friedmann-Sanchez G, Capistrant B, Ron R, Novak L, Zuijdwijk CS, Ogle G, Anderson B, Moran A, Ogle G, Pendsey S. Caregiving for children with type 1 diabetes and clinical outcomes in central India: the IDREAM study. Pediatric Diabetes 2017 (accepted for publication).
Zuijdwijk CS, Pendsey S, Ron J, Williams KA, Akiki S, Chalkhore S, Ogle GD, Ahmet A. Management of Type 1 diabetes in a limited resource context: A study of the Diabetes Research Education and Management (DREAM) Trust model in Nagpur, Central India, J Diabetol 2017 (in Press).
Atun R, Davies JI, Gale GA, Bärnighausen T, Beran D, Kengne AP, Levitt NS, Mangugu FW, Nyirenda MJ, Ogle GD et al. The Lancet Diabetes & Endocrinology Commission Diabetes in sub-Saharan Africa: from clinical care to health policy. Lancet Diabetes and Endocrinology 2017; published online July 5. Full Paper pdf Appendix pdf
Klatman E, Ogle GD. Universal health coverage and diabetes care available to all. Diabetes Voice 2017;63:4-5. Full Paper pdf
Ameyaw E, Asafo-Agyei SB, Thavapalan S, Middlehurst AC, Ogle GD. Clinical profile of diabetes at diagnosis among children and adolescents at an endocrine clinic in Ghana. World J Diabetes 2017 (in Press)
Rakhimova GN, Alimova NU, Ryaboshtan A, Waldman B, Ogle GD, Ismailov SI. Epidemiological data of type 1 diabetes mellitus in children in Uzbekistan, 1998-2014. Pediatr Diabetes, 2016. doi: 10.1111/pedi.12495. PubMed link
Marshall SL, Edidin D, Arena VC, Becker DJ, Bunker CH, Gishoma C et al. Mortality and Natural Progression of Type 1 Diabetes Patients Enrolled in the Rwanda LFAC Program from 2004-2012. Int J Diabetes Dev Ctries (2016). doi:10.1007/s13410-016-0536-z. PubMed link
Ogle GD, Abdullah M, Mason D, Januszewski AS, Besançon S. Insulin storage in hot climates without refrigeration – temperature reduction efficacy of clay pots and other techniques. Diabet Med 2016;33:1544-1553. PubMed link
Piloya T, Sunni M, Ogle G, Moran A. Childhood diabetes in Africa. Current Opinion in Endocrinology and Diabetes. 2016, 23:306-11. PubMed link
Gupta S, Gupta JK, Kumar S, Tarun S, Dayamurtinanda S, Ogle GD. Comprehensive management of type 1 diabetes in a marginalized population in northern India: a seven year retrospective review. J Diabetology 2016 June:1:1. Full paper pdf
Ogle GD, Kim H, Middlehurst AC, Silink M, Jenkins AJ. Financial costs for families of children with Type 1 diabetes in lower-income countries. Diabet Med. 2016;33:820-826. Full paper pdf*
Ogle GD, Middlehurst AC, Silink M. The IDF Life for a Child Program Index of diabetes care for children and youth. Pediatr Diabetes 2016: 17: 374–384. Full paper pdf*
Marshall SL, Edidin D, Arena VC, Becker DJ, Bunker CH, Gishoma C, Gishoma F, LaPorte RE, Kaberuka V, Ogle G, Sibomana L, Orchard TJ. Prevalence and incidence of clinically recognized cases of Type 1 diabetes in children and adolescents in Rwanda, Africa. Diabet Med. 2015;32:1186-1192.
Ogle GD, Morrison MK, Silink M, Taito RS. Incidence and prevalence of diabetes in children aged <15 years in Fiji, 2001-2012. Pediatric Diabetes 2016: 17: 222–226. PubMed link
Marshall SL, Edidin DV, Arena VC, Becker DJ, Bunker CH, Gishoma C, Gishoma F, LaPorte RE, Kaberuka V, Ogle G, Sibomana L, Orchard TJ. Glucose control in Rwandan youth with type 1 diabetes following establishment of systematic HbA1c based, care and education. Diabetes Res Clin Pract 2015;107:113. PubMed link
Patterson C, Guariguata L, Dahlquist G, Soltesz G, Ogle G, Silink M. Diabetes in the young - a global view and worldwide estimates of numbers of children with type 1 diabetes. Diabetes Res Clin Pract 2014;103:161-75. PubMed link
Atkinson MA, Ogle GD. Improving diabetes care in resource-poor countries: challenges and opportunities. Lancet Diabetes and Endocrinology 2013:1:268-270. PubMed link
Marshall SL, Edidin D, Sharma V, Ogle G, Arena VC, Orchard T. Current clinical status, glucose control, and complication rates of children and youth with type 1 diabetes in Rwanda. Pediatric Diabetes 2013;14:217-26. PubMed link
Ogle G. Children with diabetes in the developing world. Practical Diabetes 2008;25:351-352. Full paper pdf
Ogle G, Raab R, Beran D, Deeb L. Global access to and availability of insulin. Diabetes Voice 2006;51:22-25. Full paper pdf
Ogle G, Raab R. Addressing inequalities in access through long-term collaboration. Diabetes Voice 2006;51:35-41. Full paper pdf
Ogle G, Silink M. IDF child sponsorship: life for a child with diabetes. Diabetes Voice 2003;48:39-42. Full paper pdf
Ogle GD, Lesley J, Sine PY, McMaster P. Type 1 diabetes in children in Papua New Guinea. PNG Med J 2001;44:96-100. Full paper pdf
Part B - Formal evaluation by London School of Hygiene and Tropical Medicine
In 2014, the International Diabetes Federation Life for a Child (LFAC) Programmes's largest donor - The Leona M and Harry B Helmsley Charitable Trust - commissioned the London School of Hygiene and Tropical Medicine to conduct a comprehensive formal evaluation of the work of LFAC.
The work was conducted by a team lead by Professor Martin McKee and Dr. Sue Atkinson. Site visits were done in five countries: Rwanda, India, Jamaica, Mexico, and Philippines.
From the Executive Summary (2015):
“The review covered five themes:
• IDF-LFAC structure and organization
• Optimal strategic framework for high impact sustainable results
• Changes to polices that could improve quality, quantity, efficiency and effectiveness
• Impacts on countries, systems and children
• Impact on long term sustainability in T1D care delivery systems
The review overall shows that LFAC is a strong programme that is delivered well and is highly valued by the countries and the children, young people and their families that are supported by it. It is clear that LFAC enables children and young people with type 1 diabetes to survive and, as the programme and country policies strengthen, enables them also to thrive.
LFAC already does many things right and the team, albeit small, are extremely dedicated and enthusiastic. Many aspects are to be applauded and continued.
The review identifies LFAC’s strengths and challenges. It focuses particularly on the Programme's engagement in-country and on how LFAC develops a strategic direction for care and treatment of type 1 diabetes. It identifies a need for developing country leadership and building local capacity, implementing approaches that catalyze systemic improvements in type 1 diabetes care delivery systems.
The ultimate goal must be for people with type 1 diabetes to be able to get good treatment and care within their country’s health system. Unfortunately, this does not appear to be a realistic goal in the short term in most countries. Nevertheless, there is a need for a higher priority to be given to the medium and long-term sustainability of the support provided for children with type 1 diabetes, making full use of the experiences gathered by LFAC and the information that it has collected on burden of disease, health needs, and barriers to be overcome in obtaining effective care by people with type 1 diabetes.
The five themes are explored in depth and recommendations made in relation to each”.
Work is now underway to strengthen sustainability aspects and implement the other recommendations of the report.
The full report is available here.
Part C - Abstracts of ongoing research and other significant work
Gregory GA, Ogle GD. Where are the missing children?: Development and Implications of Improved Type 1 Diabetes Prevalence Estimates in Less-Resourced Countries American Diabetes Association Scientific Sessions, San Diego, June 2017. Email LFAC for copy.
Noble JA, Mack SJ, Lane JA, Ahmadov G, Ahmedani Y, Fawwad A, Zabeen B, Sidibé A, Besançon S, Abdullah M, von Oettingen JE, Larco N, Larco P, Jean-Baptiste E, Atkinson MA, Silink M, Ogle G. Extreme variability of risk for HLA “DR3” (DRB1*03:01-DQA1*05:01-DQB1*02:01) among world populations. American Diabetes Association Scientific Sessions, San Diego, June 2017. Email LFAC for copy.
Jean-Baptiste E, Larco P, von Oettingen J, Larco N, Charles MD, Charles R, Atkinson MA, Noble J, Ogle G. Autoimmunity and beta-cell function among youth with diabetes in Haiti. American Diabetes Association Scientific Sessions, San Diego, June 2017. Email LFAC for copy
Sibomana L, Briskin I, Rwabufigiri B, Gishoma C, NarayananS, Baker J, Ogle G, Orchard T. Diabetes-related Quality of Life (QoL) in Rwandan youth with type 1 diabetes (T1D). American Diabetes Association Scientific Sessions, San Diego, June 2017. Email LFAC for copy
Balsa AM, Zabeen B, Ogle GD, Tayyeb S, Azad K. Incidence estimate of type 1 Diabetes in Youth in Dhaka. European Congress of Endocrinology, Barcelona, Sept. 2017. Email LFAC for copy
Ogle GD, Govender D, Ahmadov G, Zabeen B, Besançon S, Fawwad A, Baptiste EJ, Silink M, Noble J, Wasserfall C, Atkinson M. IDF Life for a Child six-country epidemiology study – preliminary results from Azerbaijan, Bangladesh, Mali, and Pakistan. International Society for Pediatric and Adolescent Diabetes Annual Conference, Valencia, Oct 2016. Email LFAC for copy
Ogle GD, da Rocha Fernandes J, Besançon S, Ramaiya K, Ahmadov G, Orchard T, Makaroff L. Costs to governments of type 1 care in less-resourced countries – three scenarios for different income levels. International Society for Pediatric and Adolescent Diabetes Annual Conference, Valencia, Oct 2016. Email LFAC for copy
Carpenter C, Lorgeat V, Mascary MC et al. Outcomes of pediatric diabetes in resource limited settings: report from one pediatric center in Haiti. Conference poster Pediatric Academic Societies Baltimore, Apr 2016 Email LFAC for copy
Sibomana L, Orchard T. Challenges and opportunities in managing type 1 diabetes in Rwanda. Conference abstract World Diabetes Congress, Vancouver, Dec. 2015, Vancouver Email LFAC for copy
Ackley T, Barone M, Middlehurst A. Diabetes Camp – A successful international diabetes education program for youth. World Diabetes Congress, Vancouver, Dec. 2015. Email LFAC for copy
Ogle GD, Middlehurst AC, Silink M. Estimate of numbers of children and youth <26 years of age in lower-income countries who need help to receive standard diabetes care. International
Society for Pediatric and Adolescent Diabetes Annual Conference, Montreal, Oct 2014 Email LFAC for copy
Middlehurst AC, Besançon S, Sidibé AT, Aghassoum W, Majeed N, Shiruhana A, Gishoma C, Marshall SL, Orchard TJ, Ogle GD, Silink M. Establishment of diabetes registers in four under-resourced African countries. International Society for Pediatric and Adolescent Diabetes Annual Conference, Montreal, Oct 2014 Email LFAC for copy
Orchard TJ, Sibomana L, Miller R & on behalf of the Association Rwandaise des Diabetiques, the National University of Rwanda, the University of Pittsburgh, and the Life for a Child Programme. Evaluation of differing type 1 treatment regimens in Rwanda. International Society for Pediatric and Adolescent Diabetes, Toronto, 2014. Email LFAC for copy
Ogle G. Diabetes during natural disasters and political crises. International Diabetes Federation World Diabetes Congress, Melbourne, Dec 2013. Email LFAC for copy
Zuijdwijk CS, Pendsey S, Ron J, Williams KA, Akki S, Chalkhore S, Ogle G, Ahmet A. Management of type 1 diabetes in a limited resource context: A study of the DREAM Trust model in Nagpur, India. International Society for Pediatric and Adolescent Diabetes Annual Conference, Gothenburg, Oct 2013. Email LFAC for copy
Paudyal B, Ogle G, Shestra S, Allen H. Treating type 1 diabetes in Nepal: experiences from Patan hospital and the International Federation Life for a Child Program. Pediatric Diabetes 2012; 13 (Suppl 17): 136 Email LFAC for copy
Part D - Published works by others referencing IDF LFAC
i) Published papers
Noorani M, Ramaiya K, Manji K. Glycaemic control in type 1 diabetes mellitus among children and adolescents in a resource limited setting in Dar es Salaam - Tanzania. BMC Endocrine Disorders. 2016;16 Full paper pdf
Majaliwa ES, Munubhi E, Ramaiya K et al. Survey on acute and chronic complications in children and adolescents with type 1 diabetes at Muhimbili National Hospital in Dar es Salaam, Tanzania. Diabetes Care 2007;30:2187-2192. PubMed link
Haugvik S, Beran D, Klassen P, Hussain A, Haaland A. “My heart burns” – A qualitative study of perceptions and experiences of type 1 diabetes among children and youths in Tajikistan. Chronic Illn 2017:13:128-139. PubMed link
Muze KC, Majaliwa ES. Type 1 diabetes care updates: Tanzania. Indian J Endocrinol Metab 2015;19(Suppl 1):S12-S13. PubMed link
Azad K. Type 1 diabetes: the Bangladesh perspective. Indian J Endocrinol Metab 2015;19(Suppl 1):S9-S11. PubMed link
Daneman D. State of the world’s children with diabetes. Pediatr Diabetes 2009,10:120-126. PubMed Link
Dayashankar U, Rao SG, Rangaraj U, Shivaraj V, Little EE, Hedge A et al. Insulin, love and care: Poor response” subset in a “have-not” FREE type 1 diabetes clinic [DISHA] in India. International Society for Pediatric and Adolescent Diabetes Annual Conference, Montreal, Oct 2014 Email LFAC for copy
Ismailov S, Rakhimova G, Alimova N, Akbarov A, Tashmanova A, Alikhanova N, Bahadirov S, Nigmatov M. Estimation of compensation and prevalence of chronic complications of type 1 DM in children and teenagers according to the screening data. International Diabetes Federation World Diabetes Congress, Melbourne, Dec 2013. Email LFAC for copy
Gbayeah J, Somah C, Codill R, von Oettingen JE. Juvenile diabetes in Liberia – spreading the word. Pediatr Diabetes 2012;13:143. Email LFAC for copy
Duarte de Muňoz E. Managing children with diabetes in Bolivia, an Underserved Country. International Diabetes Federation World Diabetes Congress, Montreal, October 2009. Email LFAC for copy
Ismailov SI, Raghimova GN, Alimove NU. Diabetes in Uzbekistan: New horizons and collaboration ways. Montreal, October Dec 2009. Email LFAC for copy