Haemophilia. 2018;1–8. wileyonlinelibrary.com/journal/hae | 1 © 2018 John Wiley & Sons Ltd Accepted: 18 April 2018 DOI: 10.1111/hae.13517 ORIGINAL ARTICLE The Jamaican Haemophilia Registry: Describing the burden of disease G. Wharfe 1 | L. Buchner-Daley 1 | T. Gibson 1 | P. Hilliard 2 | K. Usuba 3,4 | A. Abad 3 | L. Boma-Fischer 5 | V. Bouskill 6 | G. Floros 5 | D. Lillicrap 7 | Y. Lowe 1 | D. Lowe 1 | N. Palmer-Mitchell 1 | M. L. Rand 8,9,10 | J. Teitel 5 | A. Tuttle 7 | A. Watson 1 | R. White 1 | N. L. Young 3,4 | V. S. Blanchette 3,10,11 1 University Hospital, University of the West Indies (UWI), Mona, Kingston, Jamaica 2 Department of Rehabilitation, The Hospital for Sick Children, Toronto, ON, Canada 3 Child Health Evaluative Sciences Program, Research Institute, The Hospital for Sick Children, Toronto, ON, Canada 4 School of Rural and Northern Health and ECHO Research Centre, Laurentian University, Sudbury, ON, Canada 5 Department of Hematology, Comprehensive Care Hemophilia Program, St. Michael’s Hospital, Toronto, ON, Canada 6 Department of Nursing, The Hospital for Sick Children, Toronto, ON, Canada 7 Department of Pathology and Molecular Medicine, Queen’s University, Kingston, ON, Canada 8 Departments of Laboratory Medicine & Pathobiology, Biochemistry and Paediatrics, University of Toronto, Toronto, ON, Canada 9 Translational Medicine Program, Research Institute, The Hospital for Sick Children, ON, Canada 10 Division of Haematology/Oncology, The Hospital for Sick Children, Toronto, ON, Canada 11 Department of Paediatrics, University of Toronto, Toronto, ON, Canada Correspondence Victor Blanchette, Division of Hematology/ Oncology, The Hospital for Sick Children, Toronto, ON, Canada. Email: victor.blanchette@sickkids.ca Funding information Shire Global; Hospital for Sick Children; Novo Nordisk Haemophilia Foundation; World Federation of Hemophilia Introduction: Jamaica has an estimated 200 persons with haemophilia (PWH), who face significant constraints in access to specialized haemophilia care, including access to clotting factor concentrates. Aim: The aim of this paper is to establish the current burden of disease in PWH in Jamaica. Methods: PWH were enrolled through the University Hospital of the West Indies, Jamaica. The impact of haemophilia was assessed using a comprehensive battery of heath outcome measures that included the following: laboratory, clinical information and validated outcome measures of joint structure and function, activity, and health- related quality of life (HRQoL) to provide a health profile of the Jamaican haemophilia population. Results: In all, 45 PWH were registered (mean age: 29, range: 0.17-69 years), includ- ing 13 children (<18 years of age) and 32 adults. In this sample, 41 had haemophilia A (30 severe) and 4 had haemophilia B (3 severe); 10 patients with haemophilia A were inhibitor positive. The results indicate that adults with haemophilia in Jamaica have significant joint damage: mean Haemophilia Joint Health Score (HJHS) = 42.1 (SD = 17.3); moderate activity levels − mean Haemophilia Activities List (HAL) score = 64.8 (SD = 17.8); and low HRQoL scores − mean Haemo-QoL-A score = 62.3 (SD = 19.4). Results for children are also reported but should be interpreted with cau- tion due to the small sample size. Conclusions: There is a very high burden of disease in PWH in Jamaica. The health profiles reported in this paper are an essential first step in advocating for a multidis- ciplinary Comprehensive Care Program for assessment and care of PWH in Jamaica. KEYWORDS burden of disease, haemophilia, health assessment, Jamaica, outcome measures, registry