Zita Gacser: ”EHC Think Tank” Registries for Bleeding Disorders
Zita Gacser, Community and Projects Lead at EHC – European Haemophilia Consortium, reposted from EHC on LinkedIn:
”I’m excited to share a new paper I co-authored: ‘Patient registries for bleeding disorders: how to strengthen transparency to improve patient care?’
Over three years of discussion in the EHC Think Tank Registries workstream, we kept coming back to one key theme: transparency.
Transparency is essential for patient registries.
Without it, registries risk being fragmented, duplicative, and less useful not only for patients and patient organisations, but also for clinicians, researchers, policymakers, and other stakeholders who rely on them.
With it, we can build trust, align data, and make collaboration possible.
Link to the full paper below.
Gregor Cuzak, John Waller, Solange Corriol-Rohou, Kelly Brown-Plueschke, Roberta Palla, Mariëtte Driessens”
European Haemophilia Consortium (EHC) shared on LinkedIn:
”How can we make bleeding disorder registries work better for patients?
The EHC Think Tank just released important findings on patient registries for bleeding disorders.
After 2+ years of workshops and collaboration, they’ve identified key barriers holding back progress: fragmented data, limited transparency, and poor collaboration between registries.
Their solution? Clear recommendations for:
- Better transparency in registry governance
- Standardised data collection approaches
- Improved data sharing protocols
- A minimum core dataset for European alignment
This could be a game-changer for improving patient care across Europe by making registries more effective and interconnected.
Read the full paper and join the discussion”
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