Data protection
The ORCHESTRA project aims to create a new pan-European cohort. Data analysis will allow the integration of epidemiological, clinical, microbiological, and genotypic aspects of patient cohorts with environment and socio-economic features.
Discover how your data plays a vital role in the ORCHESTRA research ensemble, akin to pieces of a complex puzzle that, when combined, unveil crucial insights into public health.
This infographic delves into the journey of patient data, starting with the research's design and continuing through the informed consent process to the protection of privacy, all under the vigilant eyes of Ethics Committees aligned with National and European Regulations.
The informed consent you provide empowers researchers to collect essential health information while upholding your right to privacy and control over your data.
How your data make ORCHESTRA research possible
A cohort study is like gathering pieces of a puzzle, which contribute to uncovering important insights about people’s health. Through the consent to collect and use your data, you help complete this puzzle.
How ORCHESTRA protects your data
The Cohort study
Data protection starts from the creation of the study before you sign the informed consent.
Researchers decide: the objectives of a study, what data they need, which tools are best, which methods to use
The research center that coordinates the study creates the protocol, the informed consent, and the privacy policy and submits them to its Ethics Committee.
The approved documents are shared with the participating centers, which will submit them to their local Ethics Committee for approval.
The local Ethics Committee approves the documents only if they are in line with the National and European Regulations
You sign the informed consent.
Signing the informed consent
Medical staff explain the study and ask you to sign the informed consent.
You can withdraw your consent at any time.
How ORCHESTRA uses your data
With your consent, researchers can collect information using, for example:
Health records over time
Biological samples (blood, swabs, etc.)
Questionnaires
Health records over time
Your personal information (like your name and address) is kept separate from the data that scientists use for their research.
This helps protect your privacy because researchers can still analyze the data they need without knowing who you are.
These data are stored in a secure certified system called REDCap.
Researchers use computer programs to piece data together, just like solving a puzzle.
What we can achieve with your help
Researchers draw conclusions and think about what it means for people’s health.
They share their research findings and discuss them at conferences and seminars.
The results are reviewed by experts all around the world.
Researchers finally publish articles and guidelines.
ORCHESTRA has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 101016167.
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