eTRIKS Manifesto – Organisations that Support Research
It is a societal responsibility to maximize the impact of medical research datasets.
Medical research datasets almost always have relevance beyond the initial study for which they were collected.
Our ability to interrogate complexity of disease is now at a stage that the bottleneck in making advances in disease understanding is frequently the availability of data.
Integrated data, and data that can easily be explored by translational researchers is valuable data.
There is an obligation to strike a proper balance between data privacy and the value of data
Adoption of standards can improve the efficiency of data curation many fold.
Usage of a common platform for data integration facilitates data sharing and reuse.
We recognise the importance of the assertions listed above and pledge to require researchers we are supporting to:
Always have a data management plan to assure the data generated is of high quality prior to the conduct of any medical research study;
Use standards such as the ones described in the eTRIKS standards starter pack;
Respect the need to protect data privacy by adopting best practices such as eTRIKS Code of practice on the secondary use of data collected in medical research;
Harmonise and integrate datasets by using software such as the tranSMART Core to store datasets once locked;
Enable the exploration of datasets by translational researchers through the use of applications such as the tranSMART application and analytic plugins;
Strive to share and collaborate with others to derive the maximal value from the data that has been collected.