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Our published papers

Sharing the results of our research is an important part of what we do.

We regularly publish papers about our projects and studies in peer-reviewed journals relevant to the care of people with bleeding disorders.


Glanzmann’s 360 – The lived experience of people with Glanzmann thrombasthenia

  • Khair K, Fletcher S, Jenner K, Holland M. One day at a time: Life with Glanzmann thrombasthenia – Qualitative results from the GT 360 study. Haemophilia. 2024; 30(6): 1373-1382. doi: 10.1111/hae.15126.
  • Khair K, Fletcher S, Boyton M, Holland M. Bleeding and quality of life in people with Glanzmann thrombasthenia – Insights from the Glanzmann’s 360 study. Res Pract Thromb Haemost. 2024; 8(7): 102586. doi: 10.1016/j.rpth.2024.102586.


Perceptions of Pain in Haemophilia

  • Khair K, McLaughlin P, Roussel N, Boyton M, Holland M. Prevalence and perceptions of pain in people with haemophilia: A UK study. Haemophilia. 2023; 29(6): 1509-1518. doi: 10.1111/hae.14860.
  • Khair K, Kriukow J, Holland M. “It’s a way of life”: Results from the Perceptions of Pain in Haemophilia study. J Haem Pract. 2022; 8(1): 145-154. doi: 10.2478/jhp-2021-0020.


The Cinderella study

  • Khair K, Pollard D, Steadman L, Jenner K, Chaplin S. The views of women with bleeding disorders: Results from the Cinderella study. Haemophilia. 2022; 28(2): 1-10. doi: 10.1111/hae.14514.
  • Sanigorska A, Chaplin S, Holland M, Khair K, Pollard D. The lived experience of women with a bleeding disorder: A systematic review. Res Pract Thromb Haemost. 2022; 6: e12652. doi: 10.1002/rth2.12652.


Emi & Me

  • Fletcher S, Jenner K, Holland M, Khair K. The lived experience of a novel disruptive therapy in a group of men and boys with haemophilia A with inhibitors: Emi & Me. Health Expect. 2022; 25(1): 443-454. doi: 10.1111/hex.13404.


Project GYM

  • McLaughlin P, Holland M, Dodgson S, Khair K. Project GYM: A randomized feasibility study investigating effect on motivation of personal trainer-led exercise in young men with hemophilia. Res Pract Thromb Haemost. 2021; 5(8): e12613. doi: 10.1002/rth2.12613.
  • Khair K, Holland M, Dodgson S, McLaughlin P, Fletcher S, Christie D. Fitness enhances psychosocial well-being and self-confidence in young men with hemophilia: Results from Project GYM. Res Pract Thromb Haemost. 2021; 5(8): e12622. doi: 10.1002/rth2.12622.


The Exigency study

  • Fletcher S, Jenner K, Holland M, Khair K. Barriers to gene therapy, understanding the concerns people with haemophilia have: an exigency sub-study. Orphanet J Rare Dis. 2024; 19(1): 59. doi: 10.1186/s13023-024-03068-2.
  • Fletcher S, Jenner K, Holland M, Khair K. Expectation and loss when gene therapy for haemophilia is not an option: An Exigency sub-study. Haemophilia. 2023; 29(3): 776-783. doi: 10.1111/hae.14774.
  • Fletcher S, Jenner K, Pembroke L, Holland M, Khair K. The experience of people with haemophilia undergoing gene therapy in a clinical trial setting: Regaining Control, an Exigency Study. Orphanet J Rare Dis. 2022; 17(1): 155. doi: 10.1186/s13023-022-02256-2.
  • Fletcher S, Jenner K, Holland M, Chaplin S, Khair K. An exploration of why men with severe haemophilia might not want gene therapy: The exigency study. Haemophilia. 2021; 27: 760–768. doi: 10.1111/hae.14378. 
  • Khair K, Steadman L, Chaplin S, Holland M, Jenner K, Fletcher S. Parental perspectives on gene therapy for children with haemophilia: The Exigency study. Haemophilia. 2021; 27(1): 120-128. doi: 10.1111/hae.14188.


The BBC study

  • Khair K, Klukowska A, Myrin Westesson L, Kavakli K, Escuriola C, Uitslager N, Santoro C, Holland M, von Mackensen S. The burden of bleeds and other clinical determinants on caregivers of children with haemophilia (the BBC Study). Haemophilia. 2019; 25(3): 416-423. doi: 10.1111/hae.13736.
  • von Mackensen S, Myrin Westesson L, Kavakli K, Klukowska A, Escuriola C, Uitslager N, Santoro C, Holland M, Khair K. The impact of psychosocial determinants on caregivers’ burden of children with haemophilia (results of the BBC study). Haemophilia. 2019; 25(3): 424-432. doi: 10.1111/hae.13684.


Miscellaneous

  • Fletcher S, Jenner K, Khair K. Shared decision-making for gene therapy in haemophilia care. J Haem Pract. 2023; 10(1): 62-67. doi: 10.2478/jhp-2023-0009.
  • Khair K, Pollard D, Harrison C, Hook S, O’Driscoll M, Holland M. HOw Patients view Extended half-life products: impressions from real world experience (The HOPE study). Haemophilia. 2019; 25(5): 814-820. doi: 10.1111/hae.13803.
  • Khair K, Holland M. The Kids’ immune thrombocytopenia tool is not suitable for assessing quality of life in children with platelet function disorders. Haemophilia 2018; 24(4): e259-e261. doi: 10.1111/hae.13528.
  • Khair K, Holland M, Bladen M, Griffioen A, McLaughlin P, von Mackensen S; SO-FIT Study Group. Study of physical function in adolescents with haemophilia: The SO-FIT study. Haemophilia. 2017; 23(6): 918-925. doi: 10.1111/hae.13323.
  • Khair K, Holland M, Pollard D. The experience of girls and young women with inherited bleeding disorders. Haemophilia. 2013; 19(5): e276-81. doi: 10.1111/hae.12155.