Discover and read the best of Twitter Threads about #orphandisease
Most recents (2)
Some quick thoughts on $NWBO and #DCVaxL. DCVaxL is designated an #OrphanDrug, for an #OrphanDisease, #Glioblastoma. This provides a bunch of benefits which are off topic for this thread.
My main point is to suggest that patients needing #DCVaxL may likely qualify for either of two funds in the UK, the #InnovativeMedicinesFund or the #CancerDrugsFund, which together have £640M allocated to provide early coverage to patients in the UK's NHS.
The UK charity, BrainTumorResearch.org recently put out a PR about the new program in the UK for rare diseases, which is modeled on an already existing program called the #CancerDrugsFund.
I get inspired by real world problems that I feel are solvable with data, because then it becomes within my scope to tackle. If I look at #glioblastoma I see room for #blockchain to provide clarity on #patientconsent for uses to enable monetization, ideally to help offset costs.
To unpack these things further, I mean leveraging smart contracts for dynamic consent or 'prosent' as presented here: jme.bmj.com/content/early/…
This would allow for the patient to opt into selling their data to researches, insurance or pharmaceutical companies
This would allow for the patient to opt into selling their data to researches, insurance or pharmaceutical companies
Another resource I've found is this one on how the Malta Biobank is using dynamic consent via hyperledger fabric...
"a more robust model could lay the foundation for a closer collaboration between biobank managers, researchers, and research partners" doi.org/10.1038/s41431…
"a more robust model could lay the foundation for a closer collaboration between biobank managers, researchers, and research partners" doi.org/10.1038/s41431…
