The World Federation of Hemophilia Annual Global Survey 1999‐2018

Autor:	Ellia Tootoonchian, Glenn F. Pierce, Brian O'Mahony, Michael Makris, Bruce L. Evatt, Alfonso Iorio, M. Brooker, Mark W. Skinner, Paula H B Bolton-Maggs, Donna Coffin, Jeffrey S. Stonebraker
Rok vydání:	2020
Předmět:	Male medicine.medical_specialty Adolescent International Cooperation media_common.quotation_subject HIV Infections 030204 cardiovascular system & hematology Hemophilia A Haemophilia Severity of Illness Index Young Adult 03 medical and health sciences 0302 clinical medicine Prevalence medicine Humans Quality (business) Healthcare Disparities Quality of care Developing Countries Genetics (clinical) media_common Organizations Factor VIII Data collection business.industry Capacity building Hematology General Medicine medicine.disease Hepatitis C von Willebrand Diseases Cross-Sectional Studies Family medicine Female business Delivery of Health Care 030215 immunology
Zdroj:	Haemophilia. 26:591-600
ISSN:	1365-2516 1351-8216
DOI:	10.1111/hae.14012
Popis:	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.
Databáze:	OpenAIRE
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