The Jamaican Haemophilia Registry: Describing the burden of disease

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.

[1]  J. Carneiro,et al.  Comparing the burden of illness of haemophilia between resource‐constrained and unconstrained countries: the São Paulo–Toronto Hemophilia Study , 2017, Haemophilia : the official journal of the World Federation of Hemophilia.

[2]  P. McLaughlin,et al.  Study of physical function in adolescents with haemophilia: The SO‐FIT study , 2017, Haemophilia : the official journal of the World Federation of Hemophilia.

[3]  V. Blanchette,et al.  A prospective study of health‐related quality of life of boys with severe haemophilia A in China: comparing on‐demand to prophylaxis treatment , 2017, Haemophilia : the official journal of the World Federation of Hemophilia.

[4]  N. Young,et al.  International cross‐cultural validation study of the Canadian Haemophilia Outcomes: Kids’ Life Assessment Tool , 2015, Haemophilia : the official journal of the World Federation of Hemophilia.

[5]  R. Ljung,et al.  Definitions in hemophilia: communication from the SSC of the ISTH , 2014, Journal of thrombosis and haemostasis : JTH.

[6]  K. Fischer,et al.  Using the Haemophilia Joint Health Score for assessment of teenagers and young adults: exploring reliability and validity , 2013, Haemophilia : the official journal of the World Federation of Hemophilia.

[7]  T. Humphries,et al.  Consequences of switching from prophylactic treatment to on‐demand treatment in late teens and early adults with severe haemophilia A: the TEEN/TWEN study , 2013, Haemophilia : the official journal of the World Federation of Hemophilia.

[8]  V. Blanchette,et al.  Updating the Canadian hemophilia outcomes-kids life assessment tool (CHO-KLAT Version2.0). , 2013, Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research.

[9]  R. Engelbert,et al.  Validation of a new pediatric joint scoring system from the International Hemophilia Prophylaxis Study Group: Validity of the hemophilia joint health score , 2011, Arthritis care & research.

[10]  P. Helders,et al.  Development and preliminary testing of a Paediatric Version of the Haemophilia Activities List (pedhal) , 2010, Haemophilia : the official journal of the World Federation of Hemophilia.

[11]  P. Harris,et al.  Research electronic data capture (REDCap) - A metadata-driven methodology and workflow process for providing translational research informatics support , 2009, J. Biomed. Informatics.

[12]  M. Bullinger,et al.  Cross‐cultural development and psychometric evaluation of a patient‐reported health‐related quality of life questionnaire for adults with haemophilia , 2008, Haemophilia : the official journal of the World Federation of Hemophilia.

[13]  A. Viswabandya,et al.  Psychometric analysis of the Functional Independence Score in Haemophilia (FISH) , 2007, Haemophilia : the official journal of the World Federation of Hemophilia.

[14]  V. Blanchette,et al.  Definitions for haemophilia prophylaxis and its outcomes: The Canadian Consensus Study , 2007, Haemophilia : the official journal of the World Federation of Hemophilia.

[15]  B. Feldman,et al.  Hemophilia joint health score reliability study , 2006, Haemophilia : the official journal of the World Federation of Hemophilia.

[16]  P. Helders,et al.  Measuring patients’ perceptions on their functional abilities: validation of the Haemophilia Activities List , 2006, Haemophilia : the official journal of the World Federation of Hemophilia.

[17]  P. Helders,et al.  Functional consequences of haemophilia in adults: the development of the Haemophilia Activities List , 2004, Haemophilia : the official journal of the World Federation of Hemophilia.

[18]  V. Blanchette,et al.  Development of a health‐related quality of life measure for boys with haemophilia: the Canadian Haemophilia Outcomes – Kids Life Assessment Tool (CHO‐KLAT) , 2004, Haemophilia : the official journal of the World Federation of Hemophilia.

[19]  Michael Seid,et al.  PedsQL™ 4.0: Reliability and Validity of the Pediatric Quality of Life Inventory™ Version 4.0 Generic Core Scales in Healthy and Patient Populations , 2001, Medical care.

[20]  E G Tuddenham,et al.  The hemophilias--from royal genes to gene therapy. , 2001, The New England journal of medicine.

[21]  J. Wright,et al.  Measurement properties of the activities scale for kids. , 2000, Journal of clinical epidemiology.

[22]  J. Varni,et al.  The PedsQL: measurement model for the pediatric quality of life inventory. , 1999, Medical care.

[23]  C. Bombardier,et al.  The role of children in reporting their physical disability. , 1995, Archives of physical medicine and rehabilitation.

[24]  Jo Van Hoey Using the , 2019, Beginning x64 Assembly Programming.

[25]  D. Grobbee,et al.  Outcome in moderate haemophilia. , 2014, Blood transfusion = Trasfusione del sangue.

[26]  R. Kessler,et al.  Self-Reported Population Health: An International Perspective based on EQ-5D , 2014, Springer Netherlands.

[27]  Joseph P. Near,et al.  How to cite this article , 2011 .

[28]  A. Srivastava,et al.  Functional assessment of arthropathy--an international perspective. , 2006, Seminars in hematology.

[29]  A. Williams EuroQol : a new facility for the measurement of health-related quality of life , 1990 .

[30]  A. Kasuya EuroQol--a new facility for the measurement of health-related quality of life. , 1990, Health policy.