Author: Probeadmin

Mark Skinner and David Page on Amplify

Mark Skinner, President/CEO of the Institute for Policy Advancement, USA, and David Page, National Director of Health Policy at the Canadian Hemophilia Society, Canada, talk about the importance of data collection and patient-reported outcomes for enhancing the patient voice in healthcare decision-making. They discuss one data collection project in particular, called PROBE, and highlight how… Continue reading Mark Skinner and David Page on Amplify

Association between ageing and health status in persons leaving with hemophilia and controls without a bleeding disorder

International Society on Thrombosis & Haemophilia (ISTH, SSC) 2020 Poster Abstract # PB 1012 Citation: Germini F, O’Callaghan S, Chai-Adisaksopha C, Curtis R, Frick N, Nichol M, Noone D, O’Mahony B, Page D, Stonebraker J, Skinner M, Iorio A. Association Between Aging and Health Status in Persons Leaving with Hemophilia and Controls Without a Bleeding Disorder –… Continue reading Association between ageing and health status in persons leaving with hemophilia and controls without a bleeding disorder

Education in people with Hemophilia – Insights from the PROBE Study

World Federation of Hemophilia Congress (2020) Poster Abstract # MTD‐PP‐045 (548) Citation: Kucher A, Noone D, Chai-Adisaksopha C, Curtis R, Frick N, Iorio A, Nichol M, O’Mahony B, Page D, Skinner M, Stonebraker J. Education in people with Hemophilia – Insights from the PROBE Study (2020), Abstracts. Haemophilia, 26: 3-140. doi:10.1111/hae.13941 For Abstract Click HERE (MTD‐MP‐045 (548))

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3 apps in 1: MyCBDR, myWAPPS and myPROBE

World Federation of Hemophilia Congress (2020) Poster Abstract # MTD‐PP‐025 (377) Citation: Page D, 3 apps in 1: MyCBDR, myWAPPS and myPROBE. (2020), Abstracts. Haemophilia, 26: 3-140. doi:10.1111/hae.13941 For Abstract Click HERE (MTD‐MP‐025 (377))

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The Patient Reported Outcomes, Burdens and Experiences (PROBE) Project: development and evaluation of a questionnaire assessing patient reported outcomes in people with haemophilia

Skinner, M. W., Chai-Adisaksopha, C., Curtis, R., Frick, N., Nichol M., Noone, D., O’Mahony, B., Page, P., Stonebraker, J. S. and Iorio, A. (2018). The Patient Reported Outcomes, Burdens and Experiences (PROBE) Project: development and evaluation of a questionnaire assessing patient reported outcomes in people with haemophilia. Pilot and Feasibility Studies, 2018 4:58. doi: 10.1186/s40814-018-0253-0