PROBE Study @PROBEstudy
Investigating patient perspectives on outcomes that matter most to their life & care. 🌍 #PROBEStudy | https://t.co/aIUqO1AyyC probestudy.org Global Joined May 2017-
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WFH 2026 - Save the Date. createsend.com/t/t-88D7D57664…
Happy New Year from the PROBE Study 🎉 We’re expanding in 2026 to strengthen patient-reported outcomes across bleeding disorders. #PROBEStudy
🗣️ Patient voices matter. At #EHC2025 in Vienna, meet the PROBE Study team – Mark Skinner, Fiona Brennan & Alexandra Kucher – to see how PROBE data strengthens advocacy and helps influence healthcare decision-making. #PROBEStudy #VWD #Hemophilia
🌍 Heading to #EHC2025 in Vienna? Meet the PROBE Study team – Mark Skinner, Fiona Brennan & Alexandra Kucher. Learn how patient-reported outcomes in QoL research can strengthen advocacy, support publications & influence decision-makers. #PROBEStudy #VWD #Hemophilia
📢 Exciting PROBE Study Updates! ✅ 2 posters presented at #NBDF2025 on WGPPM survey + coreVWD ✅ Join us Oct 5, 8:00am at #EHC2025 in Vienna for a session on VWD, PROBE survey adaptation & core outcome sets. Together, we amplify patient voices 💬 #VWD #PatientReportedOutcomes
Is the World Ready for Gene Therapy? Just finished presenting at #ISPOR2022 on Patient Perspective on HTA for Gene Therapy. Early patient engagement + Patient Important Outcomes are key to demonstrating value. See our full supplement onlinelibrary.wiley.com/toc/13652516/2… @PROBEstudy
Thank you Mike - PROBE is powered by the voice of patients. Available in 105+ countries 45+ languages. #WFHCongres2022 we announced a global integration and collaboration with the World Bleeding Disorder Registry @wfhemophilia. @PROBEstudy
Mark Skinner explained the PROBE patient reported outcome (PRO) questionnaire. It has been developed over the last 10 years and is probably the best PRO for #hemophilia out there. #WFH2022
After listening, to learn more about @PROBEstudy or to participate visit probestudy.org. We are working to enhance the direct patient voice in health care decision making for people living with #hemophilia. Amplify shows.acast.com/amplify/episod… via @acast
New article has been published in Haemophilia Journal: onlinelibrary.wiley.com/doi/abs/10.111…
Test-retest properties of the Patient Reported Outcomes, Burdens and Experiences (PROBE) questionnaire and its constituent domain paper has been published in Haemophilia Journal! onlinelibrary.wiley.com/doi/full/10.11…
PART-TIME EMPLOYMENT AND EARLY RETIREMENT IN PEOPLE WITH SEVERE HAEMOPHILIA: INSIGHTS FROM THE PROBE STUDY poster abstract was accepted for presentation at EAHAD in Prague, Czech Republic, from 6-8 February 2019. @EAHADnews
IMPACT OF ACUTE AND CHRONIC PAIN ON THE EQ-5D: INSIGHTS FROM THE PROBE STUDY poster abstract was accepted for presentation at @EAHADnews in Prague, Czech Republic, from 6-8 February 2019.
PREDICTORS FOR ACUTE AND CHRONIC PAIN IN PATIENTS WITH SEVERE HAEMOPHILIA IN THE PROBE COHORT poster abstract was accepted for presentation at @EAHADnews in Prague, Czech Republic, from 6-8 February 2019.
Patient Reported Outcomes, Burdens, and Experiences (PROBE) Study assessing PROs in hemophilia now published. …tfeasibilitystudies.biomedcentral.com/articles/10.11…
Don't forget to check out new PROBE Study posters @ 59th ASH meeting.
Poster Presentation-"Patient Reported Outcomes, Burdens and Experiences (PROBE) Study Data Visualization and Analysis"-Aug 25, 5:30-6:30PM
Session - “PROBE -Raising the Voice of Patients in Health Research” session will be held on Thursday, August 24th from 2:45 pm-3:45 pm
PROBE - Raising the Voice of Patients in Health Research Session @NHF Annual Meeting on August 24th, 2017. We welcome you to join us!
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361 Followers 1K Following Mi misión en esta vida es ayudar a las personas con hemofilia y otros trastornos de la coagulación.
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193 Followers 253 Following Father and passionate caregiver of a child with Severe Hemophilia. Focused on patient-centered care and dedicated to Hemophilia Research and Patient Advocacy
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