Research and publications from the Haemophilia Comprehensive Care Centre (CCC)

Working in close partnership with the Institute of Child Health, University College London and South Bank University, Great Ormond Street Hospital (GOSH) is the largest paediatric research and training centre in Britain.

All areas of the hospital take part in research, including a particular focus on research by nurses and professionals allied to medicine.

Haemophilia 2010: an exploration of the lived experience of children with haemophilia

This study, being run by Kate Khair, includes 30 children aged four to 16 with severe haemophilia. It involves new and exciting ways of finding out what children think about having haemophilia.

The study has won a Bayer Care Givers award for innovation in patient centred care.

Evaluation of the impact of sport activities on health-related quality of life of haemophilia patients study (EIS Study)

This is a questionnaire based study of children and adults with haemophilia aged six to 65, being done at GOSH, the Royal Free and Manchester adults and children’s hospital.

Clinical trials of recombinant factor VIII, factor X concentrate, recombinant factor IX.

For more information contact Kate Khair.

Khair K (2010) Minimizing joint damage: the role of nurses in promoting adherence to hemophilia treatment. Orthop Nurs 29 (3): 193-200; quiz 201-2

Alamelu J, Liesner R (2010) Modern management of severe platelet function disorders. Br J Haematol 149 (6): 813-23

McDonald V, Liesner R, Grainger J, Gattens M, Machin SJ, Scully M (2010) Acquired, noncongenital thrombotic thrombocytopenic purpura in children and adolescents: clinical management and the use of ADAMTS 13 assays. Blood Coagul Fibrinolysis 21 (3): 245-50

Richards M, Williams M, Chalmers E, Liesner R, Collins P, Vidler V, Hanley J, Paediatric Working Party of the United Kingdom Haemophilia Doctors' Organisation (2010) A United Kingdom Haemophilia Centre Doctors' Organization guideline approved by the British Committee for Standards in Haematology: guideline on the use of prophylactic factor VIII concentrate in children and adults with severe haemophilia A. Br J Haematol 149 (4): 498-507

Monahan PE, Liesner R, Sullivan ST, Ramirez ME, Kelly P, Roth DA (2010) Safety and efficacy of investigator-prescribed BeneFIX prophylaxis in children less than 6 years of age with severe haemophilia B. Haemophilia 16 (3): 460-8

Collins PW, Mathias M, Hanley J, Keeling D, Keenan R, Laffan M, Perry D, Liesner R, UK Haemophilia Centre Doctors' Organisation (2009) Rituximab and immune tolerance in severe hemophilia A: a consecutive national cohort. J Thromb Haemost 7 (5): 787-94

Bladen M, Khair K, Liesner R, Main E (2009) Long-term consequences of intracranial haemorrhage in children with haemophilia. Haemophilia 15 (1): 184-92

Khair K (2009) Children's preferences of transfer devices for reconstitution of factors VIII and IX for the treatment of haemophilia. Haemophilia 15 (1): 159-67

Bowles L, Baker K, Khair K, Mathias M, Liesner R (2009) Prophylaxis with prothrombin complex concentrate in four children with severe congenital factor X deficiency. Haemophilia 15 (1): 401-3

Scully M, Liesner R, Burgess C, Lawrie A, Machin S (2008) ADAMTS 13 in non-thrombotic thrombocytopaenic purpura conditions. Br J Haematol 141 (2): 262-5

Scully M, Yarranton H, Liesner R, Cavenagh J, Hunt B, Benjamin S, Bevan D, Mackie I, Machin S (2008) Regional UK TTP registry: correlation with laboratory ADAMTS 13 analysis and clinical features. Br J Haematol 142 (5): 819-26