Lifelines is an open protocol cohort study. So, in addition to the regular Lifelines study standard protocol (i.e., 30 years longitudinal), the open protocol offers researchers the opportunity to collect additional data and/or biological samples within the existing infrastructure. To this end, researchers can submit an application for an additional study, such as a questionnaire and/or additional biological sample collection.
For these so-called additional studies, certain principles apply:
- Researchers are themselves responsible for the funding needed for an additional study and for obtaining medical-ethical approval if needed.
- The results of an additional study will return to Lifelines and can be accessed, combined with other Lifelines data, via a research workspace.
- The results of an additional study may eventually be used, after a mutually agreed embargo period, by other researchers.
The aim of Lifelines is that additional data and samples eventually become available for researchers worldwide. Our ‘return-of-results’ rule states that researchers collecting additional data or material from Lifelines participants, or generating new data from Lifelines samples, need to return these research results, including the raw data, to Lifelines for inclusion in the biobank so that they are available for other researchers to use.
For inspiration, have a look at some of the successful additional studies that have been or are being conducted within the Lifelines cohort. If you would like to know more about the studies below, or about the possibilities to conduct an additional study, please contact us.