Srivastava A, Brewer AK, Mauser-Bunschoten EP, Key NS, Kitchen S, Llinas A, Ludlam CA, Mahlangu JN, Mulder K, Poon MC, Street A and (2013). Guidelines for the management of hemophilia. Haemophilia. 19: e1-e47. https://doi.org/10.1111/j.1365-2516.2012.02909.x
Author: Elizabeth Clearfield
Multi-stakeholder Approaches to Improve Evidence-Based Decisions in Rare Diseases: Engagement of Patients and Patient Organizations
Granados A, Mullin T, Moseley J, Meyer F, Avetisyan R, Wong-Rieger D, Kaatee M, Skinner M, Leyden S. Multi-stakeholder Approaches to Improve Evidence-Based Decisions in Rare Diseases: Engagement of Patients and Patient Organizations. Report of HTAi 2016 Panel Session. Health Technology Assessment International – Canada. (2016). Published at: http://www.htai.org 19 Sep 2016
Getting older with a bleeding disorder: a needs assessment
O’Callaghan S, Jayaram P, Caris S. Getting older with a bleeding disorder: a needs assessment. Melbourne: HFA, 2020. Detailed PROBE findings are in Appendix 2
Patient-relevant health outcomes for hemophilia care: development of an international standard outcomes set
van Balen EC, O’Mahony B, Cnossen MH, Dolan G, Blanchette VS, Fischer K, Gue D, O’Hara J, Iorio A, Jackson S, Konkle BA, Nugent DJ, Coffin D, Skinner MW, Smit C, Srivastava A, van Eenennaam F, van der Bom JG, Gouw SC. Patient-relevant health outcomes for hemophilia care: development of an international standard outcomes set.… Continue reading Patient-relevant health outcomes for hemophilia care: development of an international standard outcomes set
The potential impact of gene therapy on health-related quality of life (HRQoL) domains in haemophilia
Bullinger M, Gardner D, Lewis H, Miesbach W, Nolte S, O’Hara J, O’Mahony B, Pollard D, Skinner M, Quinn J. The potential impact of gene therapy on health-related quality of life (HRQoL) domains in haemophilia. The Journal of Haemophilia Practice. 2021;8(1): 56-68. https://doi.org/10.17225/jhp00176
User-Centered Development and Testing of the Online Patient-Reported Outcomes, Burdens, and Experiences (PROBE) Survey and the myPROBE App and Integration With the Canadian Bleeding Disorder Registry: Mixed Methods Study
Germini F, Borg Debono V, Page D, Zuk V, Kucher A, Cotoi C, Hobson N, Sevestre M, Skinner MW, Iorio A, PROBE Investigators. User-Centered Development and Testing of the Online Patient-Reported Outcomes, Burdens, and Experiences (PROBE) Survey and the myPROBE App and Integration With the Canadian Bleeding Disorder Registry: Mixed Methods Study. JMIR Hum Factors.… Continue reading User-Centered Development and Testing of the Online Patient-Reported Outcomes, Burdens, and Experiences (PROBE) Survey and the myPROBE App and Integration With the Canadian Bleeding Disorder Registry: Mixed Methods Study
Evaluation of the sexual health in people living with hemophilia
Germini, F, Chai-Adisaksopha, C, Pete, D, Curtis, R, Frick, N, Nichol, M, Noone, D, O’Mahony, B, Page, D, Stonebraker, J, Thabane, L, Crowther, M, Skinner, M, Iorio, A. Evaluation of the sexual health in people living with hemophilia. Haemophilia. 2021;27:993-1001. https://doi.org/10.1111/hae.14410
Exploring regional variations in the cross‐cultural, international implementation of the Patient Reported Outcomes Burdens and Experience (PROBE) study
Chai‐Adisaksopha, C, Skinner, MW, Curtis, R, Frick N, Nichol MB, Noone D, O’Mahony B, Page D, Stonebraker J, Thabane L, Crowther MA, Iorio A. Exploring regional variations in the cross‐cultural, international implementation of the Patient Reported Outcomes Burdens and Experience (PROBE) study. Haemophilia. 2019;25:365–372. https://doi.org/10.1111/hae.13703
Test‐retest properties of the Patient Reported Outcomes, Burdens and Experiences (PROBE) questionnaire and its constituent domains
Chai‐Adisaksopha C, Skinner MW, Curtis R, Frick N, Nichol MB, Noone D, O’Mahony B, Page D, Stonebraker J, Thabane L, Crowther MA, Iorio A. Test‐retest properties of the Patient Reported Outcomes, Burdens and Experiences (PROBE) questionnaire and its constituent domains. Haemophilia. 2019;25:75–83. https://doi.org/10.1111/hae.13649
Psychometric properties of the Patient Reported Outcomes, Burdens and Experiences (PROBE) questionnaire
Chai-Adisaksopha C, Skinner MW, Curtis R, Frick N, Nichol MB, Noone D, O’Mahony B, Page D, Stonebraker J, Thabane L, Crowther M, Iorio A. Psychometric properties of the Patient Reported Outcomes, Burdens and Experiences (PROBE) questionnaire. BMJ Open. 2018;8:e021900. http://dx.doi.org/10.1136/bmjopen-2018-021900
