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data sharing as a fundamental marble for future research

Posted by mmiglior on 17 Feb 2016 at 15:47 GMT

In this respect the data sharing is a fundamental marble of any multicenter trials when the “sharing” of a larger number of patients is necessary to complete randomized controlled trials for less common (rare) disease, when there are few hospitals that have specialized units for these patients, and when the idea starts from regions where it is difficult to recruit patients for prospective trials.
I agree that there is an ethical obligation, and it is also very good to ask data sharing to avoid for example the disintegration of data when a prospective study cannot be completed because time consuming and slow enrollment. We live in a region where it is very difficult to recruit patients for trials (culture, organization), and certainly we could participate but our share, for example, will be small with 10 patients. But another unit could share 200 patients. On the basis of this the proposal of 6 months time frame following publication for sharing deidentified individual patient data should, from my point of view, calibrated according to the number of patients have been included.
Moreover "other should seek collaboration with those who ..." , I think that collaboration is mandatory, and those who want use the data need to know at the beginning to cooperate with those who collected the data. I do not understand why "collaboration will not be possible, practical or desidered". Collaboration should be the "key point" when "sharing data".
thank you for giving the possibility to discuss this paper

No competing interests declared.