PROBE Study https://validator.w3.org/feed/docs/rss2.html Thank You for Joining PROBE + WAPPS in Kuala Lumpur, WFH 2026 In The News Declan Noone International Women’s Day 2025 – Time for Action! Part-Time Employment and Early Retirement In People With Severe Haemophilia: Insights From The PROBE Study Predictors For Acute And Chronic Pain In Patients With Severe Haemophilia In The PROBE Cohort Impact of Acute and Chronic Pain on the EQ-5D: Insights From The PROBE Study Validation of the Patient Reported Outcomes Burdens and Experiences (PROBE) Study Questionnaire Patient Reported Outcome Data on Switch from Standard to Extended Half Life in Irish Adults with Haemophilia Footer Area Test-Retest Reliability of a Mobile Application of the Patient Reported Outcomes Burdens and Experiences (PROBE) Study Mapping outcomes to coreVWD: moving toward a fully reportable core outcome set to improve access to treatment for people with von Willebrand Disease (VWD) Abstracts Summary data from the first collaboration of PROBE and Drustvo Hemofilikov Slovenije (DHS) – an ongoing quality of life study Feasibility of Administering the Patient Reported Outcomes, Burdens and Experiences (PROBE) Questionnaire Through the Canadian Bleeding Disorders Registry (CBDR) and Comparison of Data From the Two Sources Development of a WGPPM-Focused PROBE Survey: Addressing Underrepresentation in Patient-Reported Outcomes and Quality of Life Research Development of Women, Girls, and People Who Have or Had the Potential to Menstruate (WGPPM) questionnaire for PROBE study Comparing Health Outcomes for Women and Girls with Hemophilia and No Bleeding Disorder – Insights from the Patient Reported Outcomes Burdens and Experiences (PROBE) Study Gene Therapy in Hemophilia A: the Impact of Valoctocogene Roxaparvovec on Patient Outcomes – Initial Results from Patient Reported Outcomes, Burdens and Experiences (PROBE) from the GENEr8-1 Trial Initial results of the impact of valoctocogene roxaparvovec on pain occurrence and interference: Insights from PROBE Initial results of the impact of valoctocogene roxaparvovec on pain occurrence and interference: Insights from PROBE 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 Physical functioning and pain in older men with haemophilia Long-term retention plan through myGTR – a patient engagement tool from World Federation of Hemophilia Gene Therapy Registry Global Efforts in Uniting all stakeholders in ensuring safety of hemophilia gene therapy patients: the World Federation of Hemophilia Gene Therapy Registry PROBE: Brazil data Self-reflections, lessons learned and suggestions for data quality assurance from a retrospective data analysis from the Canadian Bleeding Disorders Registry 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 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 Brian O’Mahony The Patient Reported Outcomes Burdens and Experiences (PROBE) Study Questionnaire Development and Validation Validation of the Patient Reported Outcomes Burdens and Experiences (PROBE) Study Questionnaire Comparison of the Measurement Properties of the PROBE and EQ5D on Pain Test-Retest Reliability Analysis of the Patient Reported Outcomes Burdens and Experiences (PROBE) Study Mapping outcomes to coreVWD: moving toward a fully reportable core outcome set to improve access to treatment for people with von Willebrand Disease (VWD) National Member Organization’s PROBE Data Dashboard Update – Adding A Pain Dashboard Page for Better Understanding of the Pain Impact in People with Hemophilia PROBE Study Contact Us FAQs Patient Organizations Hemophilia Clinical Research Publications 2019 Publications For Patients About PROBE Who We Serve Investigators