Turn patient voice
into evidence
your organization can use.
PROBE helps patient organizations collect standardized
patient-reported outcomes and turn lived experience into evidence
that can support research, reporting, advocacy and conversations
with decision-makers.
Build evidence from the patient perspective.
PROBE captures quality-of-life outcomes that complement clinical
information and help make the real-world impact of bleeding
disorders visible.
Strengthen the patient voice with real-world data
Patients bring a perspective that is different from regulators,
manufacturers, researchers, clinicians and payers. PROBE helps move
advocacy beyond anecdote by documenting patient experiences in a
standardized and comparable way.
Your country data
Build a clearer picture of quality of life and everyday burden
reported by people in your own community.
Local and global context
Explore your results alongside broader PROBE data to support
interpretation and identify patterns that may matter locally.
Evidence for advocacy
Translate patient-reported outcomes into clearer messages for
stakeholders, policy discussions, education and advocacy.
Research support
Use standardized PROBE data to support reports, abstracts,
presentations, publications and collaborative research.
Outcomes that matter in everyday life
PROBE collects patient-reported outcomes across important areas
of health, daily life and quality of life.
PROBE also collects explanatory information
Patient-reported outcomes can be examined alongside important
demographic and bleeding-disorder characteristics.
Demographics
Personal and demographic characteristics
Disease severity
Hemophilia type and severity information
Treatment
Treatment approach and related information
Bleeding history
Bleeds, target joints and impairment
We are here to help you use your PROBE data
For National Member Organizations working with PROBE under a signed
collaboration agreement, our support can extend beyond data
collection.
Depending on the project, the PROBE team can assist with data
interpretation and analysis, development of abstracts, posters and
presentations, and preparation of tables, figures and other
publication materials.
Collaborative and project-specific
The exact level of support depends on the research question,
available data, timelines and planned output.
Data analysis
Support with defining analysis questions, interpreting PROBE data,
preparing statistical summaries and developing useful visualizations.
Abstracts, posters & presentations
Help translate local findings into conference abstracts, posters,
presentations and other research communication materials.
Publication development
Support with tables, figures, interpretation and preparation of
publication materials when a manuscript is developed.
Using evidence locally
Use PROBE findings in local reports, stakeholder meetings,
educational activities and evidence-based advocacy.
How collaboration works
PROBE works with patient organizations, treatment centres and
bleeding disorder registries to support structured collection and
meaningful use of patient-reported outcomes.
Connect with PROBE
Talk with the PROBE team about your organization, country
and objectives.
Establish collaboration
Agree on the collaboration framework and prepare for local
data collection.
Collect PROBE data
Promote participation and build a standardized body of
patient-reported evidence.
Explore and use the results
Use dashboards, analysis and research outputs to support local
interpretation, communication and advocacy.
PROBE is available in multiple countries and languages
PROBE has been translated and implemented across many countries
and languages to support international patient-reported outcome
collection.
If your organization is interested in using PROBE, contact us to
confirm the currently available language and survey options for
your country.
Looking for your country or language?
The PROBE team can confirm availability and discuss options for
collaboration, translation and local implementation.
PROBE around the world
Explore the geographic reach of PROBE and see where patient-reported
outcome collection has been supported.
Bring PROBE to your organization
Connect with the PROBE team to discuss collaboration, local data
collection and how patient-reported outcomes can support your
community.
