a. Data re-use

With the increasing importance of data-intensive science, it is becoming more and more likely that you can use existing data for your study. Before you start collecting new data, you should ask yourself whether it is possible to use existing data to answer your research question or to enrich your own dataset.

Reusing data may be more efficient than collecting new data, reducing inconvenience for study subjects and saving resources. In addition, grant reviewers will also take this into account: your chances of getting funded are significantly better if you show that you have considered reusing data. You should also consider re-using metadata from other studies as a template for your own study.

Frequently Asked Questions

Before reusing data, you should ask yourself the following questions:

  1. Will these data help me answer my research question?
    • Is the methodology of the original study suited to answer my research question?
    • What is the minimally required dataset to answer my research question?
  2. Is the quality and integrity of the data sufficient?
    • Did they follow ethical and integrity guidelines? (When in doubt, ask your local security officer or privacy officer.)
    • What informed consent requirements are involved?
    • Is the data versioned? What if a new version is released during my project: will I update, integrate and re-do my calculations?
    • Do these partners adhere to the FAIR Principles?
  3. Are the data available?
    • Do the people that produced these data offer the data on a FAIR basis?
    • Are there any restrictions on the way I can use the data? (e.g., intellectual property rights or privacy & informed consent restrictions)
    • How should I cite these data in my publications?
  4. What technical measures do I (or my UMC) have to take to use the data?
    • Are the data based on standard ontologies and terminologies? And if not, are they well described?
    • Is conversion of data formats or another preparation required?
    • Do I need a (manual) data harmonisation step to meet the standards set in my own study?
    • Is the data very voluminous? (i.e., copying it all to your own computing resources may be inefficient)
    • Can I integrate the data with other datasets?
  5. Is it wise to start a scientific collaboration?
    • Are there conflicts of interest?
    • What country are the data from?
    • Does this country have laws and regulations that I should be aware of?
    • Have I signed an appropriate Data Transfer Agreement?

Potential sources of reusable data are:

  • reference data;
  • data on reference cohorts;
  • data-repositories/-registries/-collections/-banks;
  • (clinical) data from health care;
  • biobanks;
  • the biomedical literature.

Use the Toolbox to guide you to the data archives, repositories and/or platforms at your UMC.

Yes, personal data from registries can be processed for scientific research purposes, provided that the researchers adhere to the appropriate conditions and safeguards set out in Union or Member State law.

Research results become more reliable if they are based on larger populations and registries may facilitate the collection of data from large populations. By coupling information from registries, researchers can obtain valuable new knowledge about common medical conditions such as cardiovascular disease, cancer and depression.