The value of global data standards in medical research is the focus of a new comment paper, co-authored by IMI Senior Scientific Project Manager Nathalie Seigneuret and published in the journal Clinical and Translational Science. The paper explains that standards enhance data quality and contribute to a common understanding of a disease area that is accepted by all stakeholders in medical research. Nevertheless, developing standards takes time. Ideally, they should be global; open and freely available; based on consensus; developed through an appropriate process; authorised by a standards developing organisation; unique; adopted and endorsed widely; and fit for purpose.
The authors underline the importance of applying standards from the very beginning of a study. If this is not done, resources will be needed later to map the data onto a standard, and even then it may not be possible to fully transfer all data to the standard chosen. Navigating the range of standards on offer can be bewildering; here the authors point to the Standards Starter Pack created by IMI’s eTRIKS project as a useful guide. The authors also highlight the value of funding organisations (including IMI) insisting on the use of standards for projects they fund. The authors conclude: ‘Sharing data is key to making progress on cures for the world’s major healthcare challenges – cancer, Alzheimer’s disease, diabetes, infectious disease, and more – and standardisation will accelerate that progress.’
The HARMONY Alliance is funded through the Innovative Medicines Initiative, IMI. Read more >
Source: IMI newsletter 82nd Edition – September 2018
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Public-private partnership for Big Data in Hematology
HARMONY and HARMONY PLUS are funded through the Innovative Medicines Initiative (IMI), Europe's largest public-private initiative aiming to speed up the development of better and safer medicines for patients. Funding is received from the IMI 2 Joint Undertaking and is listed under grant agreement for HARMONY No. 116026 and grant agreement for HARMONY PLUS No. 945406. This Joint Undertaking receives support from the European Union’s Horizon 2020 Research and Innovation Programme and the European Federation of Pharmaceutical Industries and Associations (EFPIA).
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