Investigating patient perspectives on outcomes that matter most to their life & care. 🌍 #PROBEStudy | https://nitter.gq/t.co/aIUqO1AyyC
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Joined May 2017
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Happy New Year from the PROBE Study 🎉 We’re expanding in 2026 to strengthen patient-reported outcomes across bleeding disorders. #PROBEStudy
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🗣️ 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
PROBE Study retweeted
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/… @PROBEstudy
PROBE Study retweeted
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
PROBE Study retweeted
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/epis… via @acast
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/…
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.
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Patient Reported Outcomes, Burdens, and Experiences (PROBE) Study assessing PROs in hemophilia now published.
pilotfeasibilitystudies.biom…
Poster Presentation-"Patient Reported Outcomes, Burdens and Experiences (PROBE) Study Data Visualization and Analysis"-Aug 25, 5:30-6:30PM
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