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Recommendations for assessment, monitoring and follow-up of patients with haemophilia

Bibliographic reference de Moerloose, P ; Fischer, K ; Lambert, T ; Windyga, J ; Batorova, A ; et. al. Recommendations for assessment, monitoring and follow-up of patients with haemophilia. In: Haemophilia, Vol. 18, no. 3, p. 319-25 (2012)
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  1. Guidelines for the Management of Haemophilia (2005)
  2. Santagostino, Mannucci, Bianchi Bonomi, Guidelines on replacement therapy for haemophilia and inherited coagulation disorders in Italy, 10.1046/j.1365-2516.2000.00361.x
  3. Swedish Guidelines for: The Care and Treatment of Haemophiliacs (2003)
  4. Batorova, Lek Obz, 56, 30 (2008)
  5. Windyga, Acta Haematol Pol, 39, 537 (2008)
  6. Batlle Javier, Villar Ana, Liras Antonio, Alonso Concepción, Altisent Carmen, Brito Dilia, Moreno Manuel, Lucía Félix, Sedano Carmen, Prieto Manuel, Calvente Natividad, Aznar José A, Jiménez Víctor, Soriano Vicente, Martorell Javier R, Iruín Gemma, Bergua Juan M, Aguilar Carlos, Consensus opinion for the selection and use of therapeutic products for the treatment of haemophilia in Spain : , 10.1097/mbc.0b013e328300c814
  7. KEELING D., TAIT C., MAKRIS M., Guideline on the selection and use of therapeutic products to treat haemophilia and other hereditary bleeding disorders, 10.1111/j.1365-2516.2008.01695.x
  8. Gringeri A., Mannucci P. M., , Italian guidelines for the diagnosis and treatment of patients with haemophilia and inhibitors, 10.1111/j.1365-2516.2005.01161.x
  9. Hay Charles R. M., Brown S., Collins P. W., Keeling D. M., Liesner R., The diagnosis and management of factor VIII and IX inhibitors: a guideline from the United Kingdom Haemophilia Centre Doctors Organisation, 10.1111/j.1365-2141.2006.06087.x
  10. BERNTORP E., SHAPIRO A., ASTERMARK J., BLANCHETTE V. S., COLLINS P. W., DIMICHELE D., ESCURIOLA C., HAY C. R. M., HOOTS W. K., LEISSINGER C. A., NEGRIER C., OLDENBURG J., PEERLINCK K., REDING M. T., HART C., Inhibitor treatment in haemophilias A and B: summary statement for the 2006 international consensus conference, 10.1111/j.1365-2516.2006.01359.x
  11. Lusher Jeanne M., Arkin Steven, Abildgaard Charles F., Schwartz Richard S., Recombinant Factor VIII for the Treatment of Previously Untreated Patients with Hemophilia A -- Safety, Efficacy, and Development of Inhibitors, 10.1056/nejm199302183280701
  12. Bray, Blood, 83, 2428 (1994)
  13. Rothschild, Thromb Haemost, 80, 779 (1998)
  14. McMillan, Blood, 71, 344 (1988)
  15. HERMANS C., DE MOERLOOSE P., FISCHER K., HOLSTEIN K., KLAMROTH R., LAMBERT T., LAVIGNE-LISSALDE G., PEREZ R., RICHARDS M., DOLAN G., , Management of acute haemarthrosis in haemophilia A without inhibitors: literature review, European survey and recommendations : ACUTE HAEMARTHROSIS IN HAEMOPHILIA: LITERATURE REVIEW AND SURVEY, 10.1111/j.1365-2516.2010.02449.x
  16. Gilbert, Semin Hematol, 30, 3 (1993)
  17. Feldman Brian M., Funk Sharon M., Bergstrom Britt-Marie, Zourikian Nichan, Hilliard Pamela, van der Net Janjaap, Engelbert Raoul, Petrini Pia, van den Berg H. Marijke, Manco-Johnson Marilyn J., Rivard Georges E., Abad Audrey, Blanchette Victor S., Validation of a new pediatric joint scoring system from the International Hemophilia Prophylaxis Study Group: Validity of the hemophilia joint health score, 10.1002/acr.20353
  18. SOUCIE J. M., WANG C., FORSYTH A., FUNK S., DENNY M., ROACH K. E., BOONE D., , Range of motion measurements: reference values and a database for comparison studies : NORMAL JOINT RANGE OF MOTION, 10.1111/j.1365-2516.2010.02399.x
  19. Elander James, Robinson Georgina, Mitchell Kathryn, Morris John, An assessment of the relative influence of pain coping, negative thoughts about pain, and pain acceptance on health-related quality of life among people with hemophilia : , 10.1016/j.pain.2009.06.004
  21. Arnold WD, Hilgartner MW, Hemophilic arthropathy. Current concepts of pathogenesis and management : , 10.2106/00004623-197759030-00001
  22. DORIA A. S., BABYN P. S., LUNDIN B., KILCOYNE R. F., MILLER S., RIVARD G. E., MOINEDDIN R., PETTERSSON H., Reliability and construct validity of the compatible MRI scoring system for evaluation of haemophilic knees and ankles of haemophilic children. Expert MRI working group of the international prophylaxis study group, 10.1111/j.1365-2516.2006.01310.x
  23. DORIA A. S., State-of-the-art imaging techniques for the evaluation of haemophilic arthropathy: present and future : PRESENT AND FUTURE OF IMAGING OF HAEMOPHILIC ARTHROPATHY, 10.1111/j.1365-2516.2010.02307.x
  24. DOLAN G., The challenge of an ageing haemophilic population : THE CHALLENGE OF AN AGEING HAEMOPHILIC POPULATION, 10.1111/j.1365-2516.2010.02287.x
  25. Genderen F. R., Meeteren N. L. U., Bom J. G., Heijnen L., Kleijn P., Berg H. M., Helders P. J. M., Functional consequences of haemophilia in adults: the development of the Haemophilia Activities List, 10.1111/j.1365-2516.2004.01016.x
  26. GROEN W. G., Van Der NET J., HELDERS P. J. M., FISCHER K., Development and preliminary testing of a Paediatric Version of the Haemophilia Activities List (pedhal) : DEVELOPMENT OF A PAEDIATRIC HAL, 10.1111/j.1365-2516.2009.02136.x
  27. SCHRAMM W., ROYAL S., KRONER B., BERNTORP E., GIANGRANDE P., LUDLAM C., GRINGERI A., BERGER K., SZUCS T., , Clinical outcomes and resource utilization associated with haemophilia care in Europe, 10.1046/j.1365-2516.2002.00580.x
  28. Steen Carlsson, Thromb Haemost, 99, 1060 (2008)
  29. Cardol Mieke, de Haan Rob J, van den Bos Geertrudis A M, de Jong Bareld A, de Groot Imelda J M, The development of a handicap assessment questionnaire: the Impact on Participation and Autonomy (IPA), 10.1191/026921599668601325
  30. BRODIN E., BAGHAEI F., ELFVINGER P., LINDVALL K., SUNNERHAGEN K. S., The Swedish version of the Haemophilia Activity List : HAL, THE SWEDISH VERSION, 10.1111/j.1365-2516.2010.02474.x
  31. Dolan, Br Med J, 339, 371 (2009)
  32. Remor E., Young N. L., Von Mackensen S., Lopatina E. G., Disease-specific quality-of-life measurement tools for haemophilia patients, 10.1111/j.1365-2516.2004.01004.x
  33. Wasserman J., Aday L. A., Begley C. E., Ahn C., Lairson D. R., Measuring health state preferences for hemophilia: development of a disease-specific utility instrument, 10.1111/j.1365-2516.2005.01054.x
  34. Ware John E., Sherbourne Cathy Donald, The MOS 36-ltem Short-Form Health Survey (SF-36) : I. Conceptual Framework and Item Selection, 10.1097/00005650-199206000-00002
  35. Ware John E., Kosinski Mark, 10.1023/a:1012588218728
  36. Miners, Sabin, Tolley, Jenkinson, Kind, Lee, Assessing health-related quality-of-life in individuals with haemophilia, 10.1046/j.1365-2516.1999.00347.x
  37. Gandek Barbara, Ware John E., Aaronson Neil K., Apolone Giovanni, Bjorner Jakob B., Brazier John E., Bullinger Monika, Kaasa Stein, Leplege Alain, Prieto Luis, Sullivan Marianne, Cross-Validation of Item Selection and Scoring for the SF-12 Health Survey in Nine Countries, 10.1016/s0895-4356(98)00109-7
  38. Torrance George W., Furlong William, Feeny David, Boyle Michael, Multi-Attribute Preference Functions : Health Utilities Index, 10.2165/00019053-199507060-00005
  39. Arranz P., Remor E., Quintana M., Villar A., Diaz J. L., Moreno M., Monteagudo J., Ugarriza A., Soto I., Perez R., Chacon J., Garcia-Luaces M., cid A., Balda I., Lopez M. F., Gutierrez M. J., Martinez E., Marrero C., Prieto M., Sedano C., Vaca R., Altisent C., Hernandez-Navarro F., , Development of a new disease-specific quality-of-life questionnaire to adults living with haemophilia, 10.1111/j.1365-2516.2004.00918.x
  40. Bullinger M., Von Mackensen S., Fischer K., Khair K., Petersen C., Ravens-Sieberer U., Rocino A., Sagnier P., Tusell J. M., Van Den Berg M., Vicariot M., Pilot testing of the 'Haemo-QoL' quality of life questionnaire for haemophiliac children in six European countries, 10.1046/j.1351-8216.2001.114.doc.x
  41. POLLAK E., MUHLAN H., VON MACKENSEN S., BULLINGER M., , The Haemo-QoL Index: developing a short measure for health-related quality of life assessment in children and adolescents with haemophilia, 10.1111/j.1365-2516.2006.01292.x
  42. Young Nancy L., Bradley Catharine S., Wakefield Cindy D., Barnard Dorothy, Blanchette Victor S., McCusker Patricia J., How well does the Canadian haemophilia Outcomes-Kids' Life Assessment Tool (CHO-KLAT) measure the quality of life of boys with haemophilia?, 10.1002/pbc.20618
  43. COLVIN B. T., ASTERMARK J., FISCHER K., GRINGERI A., LASSILA R., SCHRAMM W., THOMAS A., INGERSLEV J., , European principles of haemophilia care, 10.1111/j.1365-2516.2007.01625.x
  44. ASTERMARK J., NEGRIER C., HERMANS C., HOLME P. A., KLAMROTH R., KOTSI P., DE MOERLOOSE P., PASI J., ROCINO A., VON DEPKA M., WINDYGA J., LUDLAM C. A., , European curriculum for thrombosis and haemostasis, 10.1111/j.1365-2516.2008.01836.x