Data management in PREFER

PREFER has developed an initial data management plan to guide partners and provide oversight of general data management. This plan will be updated several times during the course of the project.

If you have questions regarding data management in PREFER, contact Monika Brand (Actelion), Eline van Overbeeke (KU Leuven) or Isabelle Huys (KU Leuven) through


The Patient Preferences in Benefit-Risk Assessments during the Drug Life Cycle (PREFER) is a five year public-private research project under the Innovative Medicines Initiative (IMI). This data protection notice informs you about how we process personal data you submit to the project via different website interfaces such as contact- and registration forms.

The PREFER consortium is committed to user privacy and data protection. This means any personal data, that can directly or indirectly identify you as a person, will be processed in compliance with the European legislation - General Data Protection Regulation (EU) 2016/679 and national data protection laws. When you agree to submit your information to PREFER, we commit to processing your personal data in accordance with the purposes, requirements and restrictions we set out in this notice.


PREFER data controllers are the individuals or bodies that, either alone or together with others, determine the different purposes and means by which your personal data will be processed. PREFER data controllers for data submitted through web interfaces are:

The purposes and legal basis for processing your personal data

The PREFER project will only process your personal data to

  • engage you in consultations and events.
  • share our results and other project outputs with you via e-mail, web, social media and newsletters.

We will only collect personal data that are necessary to achieve the processing purposes above. Your personal data will not be used for other purposes than those stated here. We will not share data with third parties, which in this case means people that are not in the PREFER project.

The primary legal basis for processing your personal data is your consent. It is important to know that you have the right to withdraw consent at any time. This will not have any negative consequences for you.


The personal information you enter here will be received and processed by Steinbeisser Project Management UG and Uppsala University. If it is required, this data may be processed by other members of the PREFER consortium. You will find a list of partners here: Access to information will be restricted to members of the consortium using access controls, which include secure logins to PREFER data repositories.


The personal information you provide here will be used until the purpose for which it was collected ends, or the PREFER project ends. Your data may be archived for ten years after the project ends (31 September 2021), or until you withdraw your consent. After either of these points, your data will be deleted. In addition, you have the right to:

  • request the controllers to give you access to the personal data pertaining to you that is in our possession.
  • request the controllers to correct any errors in your personal data to ensure it is accurate.
  • request that the controllers erase your personal data.
  • request that the controllers restrict future processing of your personal data,
  • object to processing of your personal data.
  • data portability, which means that upon your request, the data controller should provide you with a copy of all the data that we have about you in a structured, commonly used and machine-readable format.
  • withdraw your consent at any time, as the processing of your personal data occurs based on your consent. At this point, we will cease further processing of your personal data. Please note that this does not affect the lawfulness of any processing that we have already performed (before you withdraw your consent).
  • place a complaint with a supervisory authority, for example your national data protection authority.


I acknowledge that I have been informed of my rights in relation to the processing of my personal data by the PREFER project and understand my rights:

I freely consent to the processing of my personal data by PREFER for the purposes listed above.





  • Disclaimer: This website and its contents reflects the PREFER project's view and not the view of IMI, the European Union or EFPIA.


The Patient Preferences in Benefit-Risk Assessments during the Drug Life Cycle (PREFER) project has received funding from the Innovative Medicines Initiative 2 Joint Undertaking under grant agreement No 115966. 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).