Jeffrey S Stonebraker1, Paula H B Bolton-Maggs2, Mark Brooker3, Bruce Evatt4, Alfonso Iorio5,6, Michael Makris7, Brian O'Mahony8,9, Mark W Skinner5,10, Donna Coffin11, Glenn F Pierce11, Ellia Tootoonchian11. 1. Department of Business Management, Poole College of Management, North Carolina State University, Raleigh, NC, USA. 2. University of Manchester, Manchester, UK. 3. Formerly World Federation of Hemophilia, Montreal, Canada. 4. Formerly Centers for Disease Control and Prevention, Atlanta, GA, USA. 5. Department of Health Research Methods, Evidence, and Impact, McMaster University, Hamilton, ON, Canada. 6. McMaster-Bayer Endowed Research Chair in Clinical Epidemiology of Congenital Bleeding Disorders, Department of Medicine, McMaster University, Hamilton, ON, Canada. 7. Department of Infection, Immunity and Cardiovascular Disease, University of Sheffield, Sheffield, UK. 8. Irish Haemophilia Society, Dublin, Ireland. 9. Trinity College, Dublin, Ireland. 10. Institute for Policy Advancement Ltd, Washington, DC, USA. 11. World Federation of Hemophilia, Montréal, QC, Canada.
Abstract
INTRODUCTION: The World Federation of Hemophilia (WFH) strives to achieve care for all patients with inherited bleeding disorders through research, advocacy, capacity building and education. The WFH developed and implemented the Annual Global Survey (AGS), through which comprehensive demographic and treatment data on bleeding disorders are collected each year from its constituent non-governmental national organizations. AIM: To describe the development, methodology and achievements of the WFH AGS over the past 20 years. METHODS: The AGS is a yearly cross-sectional survey. Data are collected using a standardized form (available online and on paper), quality checked and reviewed, and published in English, French and Spanish. Over time, the AGS has been modified in response to changes in treatment landscape or emerging new issues. RESULTS: Over the past 20 years, the AGS has reported an increase in the number of countries participating in the survey, a tripling in the number of people identified with rare bleeding disorders and an increase in the amount of factor used to treat people with haemophilia. Yet, a large treatment inequity gap still exists across the globe. In response to this gap, the WFH has analysed the AGS reports which has stimulated further development in quality of care indicators, estimates of the global prevalence of haemophilia, patient-level data collection efforts like the World Bleeding Disorders Registry and the Gene Therapy Registry. CONCLUSION: The AGS has provided evidence to support research, programme planning and development activities of the WFH.
INTRODUCTION: The World Federation of Hemophilia (WFH) strives to achieve care for all patients with inherited bleeding disorders through research, advocacy, capacity building and education. The WFH developed and implemented the Annual Global Survey (AGS), through which comprehensive demographic and treatment data on bleeding disorders are collected each year from its constituent non-governmental national organizations. AIM: To describe the development, methodology and achievements of the WFH AGS over the past 20 years. METHODS: The AGS is a yearly cross-sectional survey. Data are collected using a standardized form (available online and on paper), quality checked and reviewed, and published in English, French and Spanish. Over time, the AGS has been modified in response to changes in treatment landscape or emerging new issues. RESULTS: Over the past 20 years, the AGS has reported an increase in the number of countries participating in the survey, a tripling in the number of people identified with rare bleeding disorders and an increase in the amount of factor used to treat people with haemophilia. Yet, a large treatment inequity gap still exists across the globe. In response to this gap, the WFH has analysed the AGS reports which has stimulated further development in quality of care indicators, estimates of the global prevalence of haemophilia, patient-level data collection efforts like the World Bleeding Disorders Registry and the Gene Therapy Registry. CONCLUSION: The AGS has provided evidence to support research, programme planning and development activities of the WFH.
Authors: Gili Kenet; Yeu-Chin Chen; Gillian Lowe; Charles Percy; Huyen Tran; Annette von Drygalski; Marc Trossaërt; Mark Reding; Johannes Oldenburg; Maria Eva Mingot-Castellano; Young-Shil Park; Flora Peyvandi; Margareth C Ozelo; Johnny Mahlangu; Jennifer Quinn; Mei Huang; Divya B Reddy; Benjamin Kim Journal: J Clin Med Date: 2021-12-18 Impact factor: 4.241
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