Skinner M, Chai‐Adisaksopha C, O’Mahony B, Noone D, Curtis R, Frick N, Nichol M, Page D, Stonebraker J, Iorio A. Patient Reported Outcomes Burdens and Experiences Study Group. Validation of the Patient Reported Outcomes Burdens and Experiences (PROBE) Study Questionnaire. Abstract PB1412. Res Pract Thromb Haemost. 2019;3(S1):1-891. https://doi.org/10.1002/rth2.12229 Background A substantial need exists to improve… Continue reading Validation of the Patient Reported Outcomes Burdens and Experiences (PROBE) Study Questionnaire
Author: Alexandra Kucher
Patient Reported Outcome Data on Switch from Standard to Extended Half Life in Irish Adults with Haemophilia
O’Mahony B, Pastarnak A, Noone A, Skinner M. Patient Reported Outcome Data on Switch from Standard to Extended Half Life in Irish Adults with Haemophilia. Abstract OC 42.4. Res Pract Thromb Haemost. 2019;3(S1):1-228. https://doi.org/10.1002/rth2.12227 Background From 2017 to the end of 2018, all people with Haemophilia B and the majority with Haemophilia A (PwH) in… Continue reading Patient Reported Outcome Data on Switch from Standard to Extended Half Life in Irish Adults with Haemophilia
Health Status of People Living with Non- severe Hemophilia – Insights from the Patient Reported Outcomes, Burdens and Experiences (PROBE) Study
Chai-Adisaksopha C, Skinner MW, Page D, Stonebraker J, Noone D, Curtis R, Frick N, Nichol M, O’Mahony B, Iorio A, and Patient Reported Outcomes Burdens and Experiences Study Group. Health Status of People Living with Non- severe Hemophilia – Insights from the Patient Reported Outcomes, Burdens and Experiences (PROBE) Study. Abstract OC 32.4. Res Pract… Continue reading Health Status of People Living with Non- severe Hemophilia – Insights from the Patient Reported Outcomes, Burdens and Experiences (PROBE) Study
Development and testing of the online probe survey and the myPROBE app and integration with the Canadian bleeding disorder registry
Germini F, Borg Debono V, Page D, Skinner MW, Zuk V, Kucher A, Sevestre M, Iorio A, on behalf of PROBE investigators. Development and testing of the online probe survey and the myPROBE app and integration with the Canadian bleeding disorder registry. Abstract P097. Haemophilia. 2020;26(S2):27-181. https://doi.org/10.1111/hae.13911 Introduction Advances to support accessibility and robust data… Continue reading Development and testing of the online probe survey and the myPROBE app and integration with the Canadian bleeding disorder registry
Association Between Aging and Health Status in Persons Leaving with Hemophilia and Controls Without a Bleeding Disorder – Insights from the PROBE Study
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, investigators P. Association Between Aging and Health Status in Persons Leaving with Hemophilia and Controls Without a Bleeding Disorder – Insights from the PROBE Study [Presentation]. ASH (2020), https://ash.confex.com/ash/2020/webprogram/Paper136397.html Background: People… Continue reading Association Between Aging and Health Status in Persons Leaving with Hemophilia and Controls Without a Bleeding Disorder – Insights from the PROBE Study
Impact of Switching to Prophylaxis with Recombinant Factor IX Fc Fusion Protein Concentrate on Patient Reported Outcomes in People with Haemophilia B Using the PROBE Questionnaire
O’Donovan M, Johnston K, Singleton E, Benson J, Ryan K, O’Connell N. Impact of Switching to Prophylaxis with Recombinant Factor IX Fc Fusion Protein Concentrate on Patient Reported Outcomes in People with Haemophilia B Using the PROBE Questionnaire [abstract]. Res Pract Thromb Haemost. 2020; 4 (Suppl 1). https://abstracts.isth.org/abstract/impact-of-switching-to-prophylaxis-with-recombinant-factor-ix-fc- fusion-protein-concentrate-on-patient-reported-outcomes-in-people-with-haemophilia-b-using-the- probe-questionnaire/. Accessed July 22, 2020. Background… Continue reading Impact of Switching to Prophylaxis with Recombinant Factor IX Fc Fusion Protein Concentrate on Patient Reported Outcomes in People with Haemophilia B Using the PROBE Questionnaire
Association Between Aging and Health Status in Persons Leaving with Hemophilia and Controls Without a Bleeding Disorder – Insights from the PROBE Study
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, investigators P. Association Between Aging and Health Status in Persons Leaving with Hemophilia and Controls Without a Bleeding Disorder – Insights from the PROBE Study [abstract]. Res Pract Thromb Haemost. 2020;4(Suppl… Continue reading Association Between Aging and Health Status in Persons Leaving with Hemophilia and Controls Without a Bleeding Disorder – Insights from the PROBE Study
Non-Severe Hemophilia Is Not Benign? – Insights from the PROBE Study
Chai-Adisaksopha C, Curtis R, Frick N, Nichol M, Noone D, Germini F, O’Mahony B, Page D, Stonebraker J, Skinner M, Iorio A, PROBE . Non-Severe Hemophilia Is Not Benign? – Insights from the PROBE Study [abstract]. Res Pract Thromb Haemost. 2020;4(Suppl 1). https://abstracts.isth.org/abstract/non-sever-hemophilia-is-not-benign-insights-from-the-probe-study/. Accessed June 29, 2020. Introduction There are limited data on the impact… Continue reading Non-Severe Hemophilia Is Not Benign? – Insights from the PROBE Study
Education Levels in People with Hemophilia – Insights from the PROBE Study
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. Abstracts MTD-PP-045 (548). Haemophilia. 2020;26(S4):3-140. https://doi.org/10.1111/hae.13941 Introduction Education is one of the key components relating to quality of life. The aim of… Continue reading Education Levels in People with Hemophilia – Insights from the PROBE Study
3 apps in 1: MyCBDR, myWAPPS and myPROBE
Page D. 3 apps in 1: MyCBDR, myWAPPS and myPROBE. MTD-MP-025 (377). Haemophilia. 2020;26(Suppl. 4):3-140. https://doi.org/10.1111/hae.13941 Introduction and Objective MyCBDR is the patient/caregiver bleed and infusion reporting app connected to the Canadian Bleeding Disorder Registry. myWAPPS is an app that enables patients to see their personalized predicted plasma factor levels in real-time. These two apps… Continue reading 3 apps in 1: MyCBDR, myWAPPS and myPROBE
