Data Access Proposal Request
Flatiron Health UK RWD Products
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Flatiron Multiple Myeloma data product
Attendees
Flatiron Health UK
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Vanessa Acquaah (chair)
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Caitlin Clunie-O’Connor (programme
manager) -
Philani Mpofu (Lead Methodologist)
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Patrycja Pluta (Research Scientist)
Research Transparency Panel
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Jennifer McCaffery (lay) -
Hayley Hall (lay) -
Thomas Smith (patient)
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Sonia Patton (patient)
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Yanrong Jiang (clinical)
Conflicts of interest
No conflicts declared by panel
Decision outcome
Approved
Summary of discussion
- The research concept is highly novel and has the capacity to fill critical gaps in local data. This is particularly important for patient subpopulations that may currently face limited treatment options due to data scarcity.
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The lay summary provided a strong overview of the consortium and how the research collaboration would work. It also offered a clear summary of
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Multiple Myeloma (MM), including its prevalence and incidence.
The application was well-written and easy to follow. The inclusion of new information, such as specific patient counts within the datasets, provided valuable context that was missing in previous applications.
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Ultimately, this study has the potential to identify significant gaps in care and accelerate the delivery of new therapies to patients.
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The panel raised several comments on other aspects of the application including:
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More clarification on the working model for the project
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Further clarification on how the researchers plan to investigate whether specific patient characteristics are driving the differences in overall survival observed between countries?
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Further information on whether uniform MM diagnostic criteria will be applied across international patient populations, and how this will be managed to ensure comparability
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To what extent might the findings in this study influence clinical practice directly in the UK?
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Further clarification on how the learnings/outputs will be shared with relevant patient communities and a rough timeline of what this may look like?
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The panel noted that researchers should have clearly stated any study limitations in their proposal to demonstrate they have considered them.
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