Youttananukorn T, Konkle B, Peyvandi F, Naccache M, Miesbach W, O’Mahony B, Makris M, Pipe S, Skinner M, Coffin D, Pierce G.Long-term retention plan through myGTR – a patient engagement tool from World Federation of Hemophilia Gene Therapy Registry. (2024), POSTER ABSTRACT (PP-054). (2024), Issue Information. Haemophilia, 30: 1-2. https://doi.org/10.1111/hae.15016 Introduction The World Federation of… Continue reading Long-term retention plan through myGTR – a patient engagement tool from World Federation of Hemophilia Gene Therapy Registry
Author: Alexandra Kucher
Physical functioning and pain in older men with haemophilia
O’Callaghan S, Parikh S, Bishop L, Caris S. Physical functioning and pain in older men with haemophilia. (2024), POSTER ABSTRACT (PP-161). (2024), Issue Information. Haemophilia, 30: 1-2. https://doi.org/10.1111/hae.15016 Introduction It is well recognised that physical functioning can be impaired and pain common as men with haemophilia (MWH) age, due to complications from their bleeding disorder.… Continue reading Physical functioning and pain in older men with haemophilia
Gene therapy with the Padua variant of a codon-optimized human factor IX gene etranacogene dezaparvovec in people with hemophilia B: effects on patient-oriented outcomes measured using thePatient Reported Outcomes, Burdens and Experiences (PROBE) questionnaire in the HOPE-B study
Pipe S, Abdelkader W, Clearfield E, Kucher A, Joseph B, Braverman J, Galante N, Monahan P, Ibrahim Q, Iorio A, Germini F, Skinner M. Gene therapy with the Padua variant of a codon-optimized human factor IX gene etranacogene dezaparvovec in people with hemophilia B: effects on patient-oriented outcomes measured using thePatient Reported Outcomes, Burdens and… Continue reading Gene therapy with the Padua variant of a codon-optimized human factor IX gene etranacogene dezaparvovec in people with hemophilia B: effects on patient-oriented outcomes measured using thePatient Reported Outcomes, Burdens and Experiences (PROBE) questionnaire in the HOPE-B study
Summary data from the first collaboration of PROBE and Drustvo Hemofilikov Slovenije (DHS) – an ongoing quality of life study
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
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
Test-Retest Reliability Analysis of the Patient Reported Outcomes Burdens and Experiences (PROBE) Study
Curtis R, Wu J, Iorio A, Nichol M, Germini F, Kucher A, Skinner M. Test-Retest Reliability Analysis of the Patient Reported Outcomes Burdens and Experiences (PROBE) Study. (2023), POSTER ABSTRACTS (PO077). Haemophilia, 29: 24-202. https://doi.org/10.1111/hae.14715 Objective To investigate the test-retest reliability of the PROBE questionnaire mobile application (MyPROBE). Methods People with hemophilia (PWH) including carriers… Continue reading Test-Retest Reliability Analysis of the Patient Reported Outcomes Burdens and Experiences (PROBE) Study
Test-Retest Reliability Analysis of the Patient Reported Outcomes Burdens and Experiences (PROBE) Study
Curtis R, Wu J, Iorio A, Nichol M, Germini F, Kucher A, Skinner M. Test-Retest Reliability Analysis of the Patient Reported Outcomes Burdens and Experiences (PROBE) Study. (2023), POSTER ABSTRACTS (PO077). Haemophilia, 29: 24-202. https://doi.org/10.1111/hae.14715 Objective To investigate the test-retest reliability of the PROBE questionnaire mobile application (MyPROBE). Methods People with hemophilia (PWH) including carriers… Continue reading Test-Retest Reliability Analysis of the Patient Reported Outcomes Burdens and Experiences (PROBE) Study
Impact on Pain and Activities of Daily Living after Switching to Emicizumab: Insight from PROBE
Kucher A, Clearfield E, Germini F, Dubé E, Merlen C, Bonnefoy A, St-Louis J, Rivard G.E, Skinner M. Impact on Pain and Activities of Daily Living after Switching to Emicizumab: Insight from PROBE.(2023), POSTER ABSTRACTS (PO177). Haemophilia, 29: 24-202. https://doi.org/10.1111/hae.14715 Introduction Emicizumab for treatment of people with severe hemophilia A (SHA) was recently approved by… Continue reading Impact on Pain and Activities of Daily Living after Switching to Emicizumab: Insight from PROBE
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. THSNA 2022. Background The patient reported outcomes, burdens and experiences (PROBE)… 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 Regional Variations in the Cross‐cultural, International Implementation of the Patient Reported Outcomes Burdens and Experience (PROBE) Study
Chai‐Adisaksopha C, Noone D, Curtis R, Frick N, Nichol M, O’Mahony B, Page D, Stonebraker J, Iorio, A, Skinner MW. Exploring Regional Variations in the Cross‐cultural, International Implementation of the Patient Reported Outcomes Burdens and Experience (PROBE) Study. Abstract PB189. Res Pract Thromb Haemost. 2018;2(S1):1-368. https://doi.org/10.1002/rth2.12125 Background The Patient Reported Outcomes Burdens and Experience (PROBE)… Continue reading Exploring Regional Variations in the Cross‐cultural, International Implementation of the Patient Reported Outcomes Burdens and Experience (PROBE) Study
