At the Parelsnoer Institute (PSI) data, images and human biomaterial are collected from patients at the eight UMC’s with various diseases (the so-called Pearls) and stored for the purpose of large scale medical research. To give this direction and ensure that research data is treated with the utmost care agreements have been made regarding the collection, preparation, storage and issuance of the biomaterial and data.
A researcher can check which items are collected by a Pearl in the catalogue. Besides this a researcher can request access to the relevant Dashboard via firstname.lastname@example.org in order to see how much data is available at that time.
The researcher (both internal and external) presents their request for access, usually in the form of a research protocol, to the Pearl’s Scientific Review Board for review. After approval the application for access should also be presented to the Medical Ethical Review Board of the coordinating UMC and then to any local review boards at the remaining UMC’s.
At completion of the study the researcher reports the research findings and eventual publications to PSI.
For information regarding the application procedure for access to research data and/or material please contact us via email@example.com.