Information for participants

Last updated on 27-3-2024 by Pierre Smith

In February 2024, more than 40,000 households were invited to participate in the BELCOHORT study. We thank everyone who responded favorably to the invitation.

For practical and logistical reasons the first phase of recruitment of BELCOHORT participants had to be closed on 9th March 2024. However, further recruitment of participants will be organized in the future.

Here you will find the leaflet ( French Version / Dutch Version ) with all the information relating to your participation in this project.

We remind you that your participation is not mandatory and you can decide to end your participation at any time.

Your participation in BELCOHORT implies that you accept:

  • to receive and complete one to two annual questionnaires lasting 30 minutes, until the end of the pilot phase of the study on December 31, 2025. If after this date BELCOHORT evolves into a large epidemiological cohort Belgian, you will be contacted to continue participating. You will of course be free to refuse at that time.
  • that your responses to the questionnaires will be linked in a confidential manner with different data sources existing in Belgium. This linkage will allow scientific studies to assess the impact of social and environmental determinants on health and will focus on administrative data (e.g. labor market, healthcare reimbursement) or environmental data (e.g. air pollution). Researchers working with this data will never be able to identify you. 
  • that we will contact you in the future to offer to participate, without obligation, in health examinations (such as measuring weight, height or blood pressure), or for the collection of biological samples (blood, saliva, etc.). These types of data collection are not envisaged in this pilot phase of BELCOHORT but will be planned in a later stage and will be subject to approval by an ethics committee. Of course, this will always be done with your consent and you will receive feedback on your results.

I want to know more about the protection of my data and privacy

Who is taking the initiative for this study?

Researchers from Sciensano: Dr Johan Van der Heyden and Dr Pierre Smith from the Health Information Service.

Ethics and insurance

The project was approved by the ethics committee of the University Hospital Ghent (UZ Gent) and the University of Ghent (UGent).

The study is conducted in accordance with Good Clinical Practice Guidelines and the Declaration of Helsinki, developed to protect individuals participating in health and medical research. 

There is no health risk to participating in this study. However, Sciensano assumes full responsibility for any damage you may suffer as a result of your participation in this study and has taken out insurance (n° 45.486.508, info.assurance@ethias.be) in accordance with the law on human experiments of May 7, 2004.

There is no cost to you for participating in this study, but there is no financial benefit either.

Protection of your data

Your participation is completely voluntary and you may decide to discontinue your participation at any time. The information you provide via the questionnaire will only be used for the purposes indicated in the invitation letter you received and on the BELCOHORT project webpage. Sciensano will only use this information to compile general statistics.

Rights, data storage and data access

In accordance with the General Data Protection Regulation (GDPR), you have the right to request access, rectification, erasure, restriction and a copy of your data. You also have the right to withdraw consent at any time, without affecting the lawfulness of processing based on consent before its withdrawal. You can exercise your rights by preference via our online form.  If you choose to share your e-mail address to receive the questionnaires, this e-mail address will only be retained until the end of the project and will be deleted afterwards. The other data will be stored for 30 years in a pseudonimised way. 

Once the survey data arrives to Sciensano, it is stripped of its identification information (e-mail) by a collaborator who is not involved in the data analysis. The survey data are placed in a folder accessible only to the scientific collaborators involved in this study. The scientific collaborators involved in the study will have access to the survey data, but will not have access to the link between the e-mails and the responses of the participants. This means that the researchers at Sciensano will not be able to identify you. 

Please note that as soon as the mail addresses are deleted, it will be difficult to know which data belongs to which person. Sciensano would therefore need additional information from the applicant who wants to execute his rights of access, modification or deletion.

Who is responsible for the processing of the data?

Sciensano is responsible for the processing of the data. The processing is based on the ground of consent (art. 6.1 (a) of the General Data Protection  regulation (GDPR)). Consent provides the legal exception to process data concerning health. (art. 9.2 (a), of the GDPR).  The processing of data is done by authorized persons, under supervision by the project coordinator (Dr. Johan Van der Heyden and Dr. Pierre Smith from the Health Information service). Contact: e-mail (belcohort@sciensano.be) or phone (02/642 57 26 or 02/642 51 46).

Sciensano is the legal responsible for the processing of your contact details (name and residence address), carried out in accordance with authorization 00½020 of the National Registry, with the aim of inviting you to participate in the “BELCOHORT project”. You can contact Sciensano at belcohort@sciensano.be. Sciensano does not have your contact details but calls on Statbel, the Belgian statistical office, which has access to the national register within the framework of its legal mission. Your contact details will only be used for this study and will not be shared with other parties. Only pseudonimized data will be accessible to research groups outside Sciensano. 

Questions or complaints about data protection?

If you have any question about data protection, please contact the Sciensano Data Protection Officer via DPO@sciensano.be or 02/642 51 02. You also have the right to lodge a complaint with a supervisory authority, hereto, you can contact the Belgian data protection authority: Drukpersstraat 35 — 1000 Brussels — Tel.: 02/274 48 00 — e-mail: contact@adp-gba.be.

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