WFH 2024 – PROBE and Slovenia PosterKucher A, Clearfield E, Kavčič M, Urbančič M, Živić Kavčič M and Skinner M. Summary data from the first collaboration of PROBE and Drustvo Hemofilikov Slovenije (DHS) – an ongoing quality of life study. (2024), POSTER ABSTRACT (PP-162). (2024), Issue Information. Haemophilia, 30: 1-2. https://doi.org/10.1111/hae.15016 Introduction Drustvo Hemofilikov Slovenije… Continue reading Summary data from the first collaboration of PROBE and Drustvo Hemofilikov Slovenije (DHS) – an ongoing quality of life study
Tag: WFH
National Member Organization’s PROBE Data Dashboard Update – Adding A Pain Dashboard Page for Better Understanding of the Pain Impact in People with Hemophilia
Kucher A, Clearfield E, Skinner M and PROBE Investigators. National Member Organization’s PROBE Data Dashboard Update – Adding A Pain Dashboard Page for Better Understanding of the Pain Impact in People with Hemophilia. (2024), POSTER ABSTRACT (PP-167). (2024), Issue Information. Haemophilia, 30: 1-2. https://doi.org/10.1111/hae.15016 Introduction The Patient Reported Outcomes, Burdens and Experience (PROBE) study has been… Continue reading National Member Organization’s PROBE Data Dashboard Update – Adding A Pain Dashboard Page for Better Understanding of the Pain Impact in People with Hemophilia
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
Quality of life of people with hemophilia in Nicaragua: A case series with PROBE Survey
López A, Uriarte X, Leytón I, Campos J, Aguilera S. (2022), (Poster) Quality of life of people with hemophilia in Nicaragua: A case series with PROBE Survey, WFH Congress 2022. View Poster: Calidad de Vida Nicaragua
PROBE Results Show Continued Burden of Disease in Canadians with Hemophilia A and B
Page D, Kucher A, Geremini F. PP-72 (1160482) PROBE results show continued burden of disease in Canadians with severe haemophilia A and B. (2022), Abstracts. Haemophilia, 28: 5-97. https://doi.org/10.1111/hae.14537 Introduction Prophylaxis with recombinant factor concentrates has been the standard of care for severe hemophilia A and B in Canada since the early 1990s and has resulted… Continue reading PROBE Results Show Continued Burden of Disease in Canadians with Hemophilia A and B
Integration of the Mexican Registry of Coagulopathies (RMC) with PROBE
Kucher A, Gaitán C, Skinner M, Cruz M, Escobar A, Alfonso O, Iorio A, germini F, Parrish R, Sevestre M. LR-07.01 (1160466) Integration of the Mexican Registry of Coagulopathies (RMC) with PROBE. (2022), Abstracts. Haemophilia, 28: 5-97. https://doi.org/10.1111/hae.14537 Introduction Registro Mexicano de Coagulopatías (RMC) is a national registry app connected to the Federation of Hemophilia of the… Continue reading Integration of the Mexican Registry of Coagulopathies (RMC) with PROBE
Feasibility of integrating PROBE (Patient Reported Outcomes, Burdens and Experiences) into a clinical care pathway to facilitate transformation to a Value-Based Health Care Model in hemophilia
Jackson S, Sheridan B, Due D, Lyons S, Waines R, Ireland T, Pete D, Iorio A, Walsh L, Skinner M, Germini F. F. PP-60 (1160288) Feasibility of integrating PROBE (patient reported outcomes, burdens and experiences) into a clinical care pathway to facilitate transformation to a value-based health care model in haemophilia. (2022), Abstracts.Haemophilia, 28: 5-97.… Continue reading Feasibility of integrating PROBE (Patient Reported Outcomes, Burdens and Experiences) into a clinical care pathway to facilitate transformation to a Value-Based Health Care Model in hemophilia
