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Documents

General documents

Factsheet String of Pearls Institute The String of Pearls Institute (PSI) is an unique partnership between the eight university medical centres (teaching hospitals) in the Netherlands. First established in 2007 by NFU, the Dutch Federation of University Medical Centres, the initiative gathers clinical data and biomaterials from all the participating institutions so that together they can promote the advance of science, improve patient treatment and encourage the development of new products. Which in turn strengthens the economic position of the pharmaceutical and biotechnology industries in the Netherlands.

Central infrastructure

Factsheet Central Infrastructure This document descibes the role of the central infrastructure, where data from different sources is brought together and made available to authorised researchers.
Factsheet PIM The String of Pearls Information Model (PIM) has been developed in order to classify and manage the more than 1800 different items of patient data collected for the initiative.
Architecture Central Infrastructure This document describes the architecture of the Central Infrastructure of the String of Pearls Institute, covering the most important issues.

Information security

Factsheet Information Security The String of Pearls Institute (PSI) collects clinical data and physical specimens from patients, for use in scientific research. To ensure that these criteria are met, in 2008 the PSI board adopted a strict information security policy for the organisation. The purpose of that policy is to bring all the data management activities and flows of information within PSI up to the required standard and to keep them that way.

Legal

Framework Regulation The PSI Framework Regulation defines the legal and ethical framework for the collection of donor data and biomaterials for the String of Pearls Institute.

Biobanking

PSI Biobank agreements Biomaterial for the String of Pearls Institute is collected at all eight Dutch UMCs. It is then stored in a number of separate biobanks, although these ultimately serve as one common source for scientific research. The collection process involves different UMCs, different Pearls and different UMC departments. To guarantee the quality and consistency of collection, a series of joint agreements has been reached. They are set out in this document.