The publication of study results and the protection of the subjects’ data privacy
The publication of study results is a scientific and ethical requirement, as called for by the World Medical Association and the WHO. To be able to assess the pros and cons of treatments or medication, it is necessary to have as complete an overview as possible of the existing and acquired knowledge.
For this reason, indirect personal treatment data are always evaluated at the end of a study. In doing so, it is not possible to identify the patients from whom the data have been obtained. It is only possible to compare reference groups and the medication being tested. The evaluation shows whether the compared treatments are equivalent on average, or whether one has achieved a better result. The number of adverse effects in the treatment arms is evaluated and assessed as well.
Researching pharmaceutical companies have undertaken to publish the results of each patient trial commissioned by them once the medication being tested is approved. If study results are published late or not at all, this can distort the assessment of treatments or medication in the context of time and the current state of knowledge. This is why the timely publication of clinical study results is particularly important.
Therefore the study results are published online and in medical journals. Personal data of individual patients are not included in these publications.
If you or your child are interested in the results of your study, please contact the physicians who supported you during the study. However, it usually takes many months for the results of a study to be published; sometimes even years if the study is designed for a period of several years.
A new European law also requires for the study results to be summarised in a language understandable to non-experts after the end of a study. Such summaries are published in the EudraCT Register (https://www.clinicaltrialsregister.eu/).