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
Author: Alexandra Kucher
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
Relationship of PROBE Pain Domain and EQ-5D: Insights from the PROBE study
Skinner M, Noone D, Curtis R, Frick N, Germini F, Kucher A, Nichol M, O’Mahony B, Page D, Stonebraker J, Iorio A. P-019 (1035680) Relationship of EQ-5D Pain Domain and Bleeds – Insights from the PROBE Study. (2021), ABSTRACTS. Haemophilia, 27: 3-20. https://doi.org/10.1111/hae.14385 Introduction Bleeding in people living with haemophilia (PWH) has a significant impact on Health-Related Quality of Life (HRQoL). This impact has… Continue reading Relationship of PROBE Pain Domain and EQ-5D: Insights from the PROBE study
Aging and health status in persons leaving with hemophilia and controls without a bleeding disorder
Germini F, O’Callaghan S, Chai-Adisaksopha R, Curtis R, Frick N, Nichol M, Noone D, O’Mahony B, Page D, Stonebraker J, Skinner M, Iorio A. Aging and health status in persons leaving with hemophilia and controls without a bleeding disorder. Abstract (20). NHF 2022. Objective People with hemophilia (PWH) have a life expectancy disadvantage as compared… Continue reading Aging and health status in persons leaving with hemophilia and controls without a bleeding disorder
A Comparative Study of Different Methods of Handling Missing Data in Patient Reported Outcomes, Burdens and Experiences (PROBE) Score Algorithm among People with Hemophilia
Ibrahim Q, Iorio A, Curtis R, Nichol M, Noone D, Stonebraker J, Skinner M, Germini F, and the PROBE Investigators. A Comparative Study of Different Methods of Handling Missing Data in Patient Reported Outcomes, Burdens and Experiences (PROBE) Score Algorithm among People with Hemophilia. (2022), Abstratc. THSNA. 2022. Background The Patient Reported Outcomes, Burdens and… Continue reading A Comparative Study of Different Methods of Handling Missing Data in Patient Reported Outcomes, Burdens and Experiences (PROBE) Score Algorithm among People with Hemophilia
Exploring the Quality Of Life And Self‐Reported Outcomes Of Patients With Hemophilia A In A Cross‐Sectional Study In Colombia
Franco J-S, Torres L, Peñuela O, Forero MDR, Rivera M, Vizcaya D. Exploring the Quality Of Life And Self‐Reported Outcomes Of Patients With Hemophilia A In A Cross‐Sectional Study In Colombia. Abstract 110. Haemophilia, 2021;27(S2):18-181. https://doi.org/10.1111/hae.14236 Introduction Collecting and interpreting patient‐reported outcomes in Hemophilia A supports the understanding of patients’ perspec‐tives on the burden of… Continue reading Exploring the Quality Of Life And Self‐Reported Outcomes Of Patients With Hemophilia A In A Cross‐Sectional Study In Colombia
