Data protection notice IMI-Conception project

ConcePTION ( will develop knowledge about medicine safety in pregnancy and breastfeeding that is funded by the Innovative Medicines Initiative.  

We are committed to protecting the privacy of website visitors and research participants This data protection notice describes how he handle personal data that you submit to us through forms that are published on our website. Information about other information we collect through this website is described in the ConcePTION website cookie notice, If you want information about how we manage research data you can find that in the Data Management Plan.

This means that personal data (any information that can identify you as a person, either indirectly or directly) will be processed in compliance with the European General Data Protection Regulation (EU) 2016/679 and national data protection laws. And that when you agree to share your data with ConcePTION, we commit to process your data in accordance with the purposes, requirements and restrictions that are set out in this notice. 

Data controllers

The ConcePTION data controllers are the individual or bodies that, alone or together with others, determine the different purposes and means that will be used to process your personal data. Controllers for data submitted through web interfaces (e.g. signing up to receive news from the project, or sending a request for information) are:

Purpose and legal basis for processing data

ConcePTION will only process your personal data to:

  • Inform you about IMI ConcePTION’s findings and results via newsletters or emails’

engage you in consultations, surveys, interviews and events, and respond to queries.

Following the principle of data minimization, we will only collect the personal data that is necessary to achieve those purposes. We process your data on two lawful basis: your consent, and our legitimate interest to communicate with stakeholders in the ConcePTION project and the infrastructures that we develop for collecting, processing and analyses different kinds of pharmacovigilance data, models and infrastructures for studying how medicines transfer to breast milk, and a knowledge bank for medicine safety in pregnancy and breastfeeding. You have the right to withdraw consent at any time without any negative consequences. Either by contacting the data controllers with a request to delete your personal data. You can also opt out to receive newsletters from us thorugh the website sign-up interface.

Recipients of this personal data

Your personal information, i.e., the contact information provided will be received and processed by UMC Utrecht (website cookies, requests for information, event administration) and Uppsala University (newsletters, event administration) for the above purposes. If it is required, this data may also be processed by staff working for other ConcePTION project partners (researchers, administrative staff), in order to respond to a query, or manage event participation. Access to information will be restricted to members of the consortium and entities curating the ConcePTION legacy, and protected using secure (two factor authentication) logins to any repositories that hold personal data. At the end of the ConcePTION project, subscribers to the ConcePTION e-mail newsletter will be given the opportunity to opt out to receiving information from the research infrastructures developed in the project, before that personal data is transferred to those partners and/or legal entities to be used for the same purposes, intents and lawful basis set out in this data protection notice.

Period and nature of processing, and the rights of the individual:

Your personal information will be used until the purpose for which it was collected ends; it may be archived per contractual requirement for up to ten years after the end of the project (30 March 2024) or until you withdraw your consent, after either of these points, it will be deleted. This means that after the end of the project, processed personal data (e.g. event participation lists) collected by Uppsala University and UMCU through this website interface will be archived in accordance with national legislation (normally 10 years). In addition, you have the right to:

  • request the controllers to give you access to the personal data about 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 the 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.

By submitting my contact information to ConcePTION:

I acknowledge that I have been informed of, and understand, my rights in relation to the processing of my personal data for the purposes of the ConcePTION project and freely consent to the processing of my personal data by ConcePTION for the purposes set out above.

About the ConcePTION project

ConcePTION is funded by the Innovative Medicines Initiative 2 Joint Undertaking under grant agreement No 821520. This Joint Undertaking receives support from the European Union’s Horizon 2020 research and innovation programme and EFPIA.

ConcePTION aims to establish a trusted ecosystem that can efficiently, systematically, and in an ethically responsible manner, generate and disseminate reliable evidence-based information regarding effects of medications used during pregnancy and breastfeeding to women and their healthcare providers. This will be achieved by generating, cataloguing, linking, collecting and analysing data from pharmacovigilance, modelling, routine healthcare, breastmilk samples through a large network.

Please note that the ConcePTION Data Management Plan (D8.5) and the “Report on initial information and research governance for WP1-5” (D7.4) addresses personal data collected for research purposes.