clinical cohorts ("Pearls")
About the Parelsnoer Institute
The Parelsnoer Institute was established in 2007 by the Dutch Federation of University Medical Centers (NFU). The goal was to establish a multicenter biobank infrastructure that would facilitate high quality cohort research. Large cohorts in different disease areas (the ‘Pearls’) are established from carefully-documented patients, while patient privacy is ensured. PSI facilitates uniform collection and storage of clinical data, images and human biomaterials, carefully aligned with the demands of the care process. This ensures seamless connection of high quality health care and scientific research. Furthermore, PSI is open for collaboration with external scientists, enabling easy and reliable cohort research. This supports the development of scientific knowledge and innovative treatments to improve health care or even prevent disease in the future. Visit the Parelsnoer website for more information.
Enabling reliable cohort research within and beyond university medical centers
Based on its broad experience with complex projects and research infrastructure, Lygature was appointed to handle strategic and operational management of PSI. Lygature is responsible for three main areas:
- Program management. Lygature provides strategic and operational management for PSI. This includes optimizing internal processes, supporting the Pearls in all phases of development, and looking for funding opportunities and collaborations outside of the university medical centers.
- Collaboration. Lygature is responsible for collaboration with other initiatives such as HEALTH-RI, which aims to establish one national infrastructure for Personalized Medicine and Health Research.
- Communication. Lygature supports the PSI team for the communication strategy and tools that will highlight added value from the Parelsnoer Institute.
Clinical biobanks depend on a complex infrastructure in order to become more than a collection of samples: when properly established, they can form the basis for translational research and personalized medicine. Implementation of data collection for clinical biobanks in existing clinical processes presents a significant management and communication challenge. Lygature supports the PSI team with a broad range of skills in order to facilitate operational, strategic and communication management, thereby contributing to PSI’s efforts towards the integration of health care and scientific research.
Lygature together with
Netherlands Federation of University Medical Centres, Academic Medical Center, Erasmus Medical Center, Leiden University Medical Center, Maastricht University Medical Center+, Radboud University Medical Center, University Medical Center Groningen, University Medical Center Utrecht, VU University Medical Center
Join us at “10 years of Parelsnoer Institute” on 23 November
The Parelsnoer Institute (PSI) has made many achievements in the past 10 years. The number of pearls has increased significantly in recent years. Now, there are 18 active pearls and there are several being established. On Thursday, November 23, Parelsnoer Institute will celebrate "10 years of Parelsnoer Institute: Together towards a Sparkling Future".
For more information, please visit the event website (in Dutch).
Subsidy Dutch Cancer Society for biobank and database liver cell cancer patients
Gastrointestinal and liver specialist Minneke Coenraad and her colleagues of the Dutch Hepatocellular & Cholangiocarcinoma Group receive a subsidy of 440.000 euros. They will set up a national database and biobank for patients with cancer that originates from the liver or bile duct. Goal is to make diagnosis in an earlier stage possible and to improve the treatment of liver cell cancer. Read more (in Dutch).
Parelsnoer Institute publication in Open Journal of Bioresources
On February 17, 2017, the Open Journal of Bioresources published the design paper “The Parelsnoer Institute: A National Network of Standardized Clinical Biobanks in the Netherlands”.
The new publication illustrates the total package of the Parelsnoer Institute (PSI) into greater detail and is the primary reference for all researchers who use PSI data and materials.
The Parelsnoer Institute is a collaborative network of all eight Dutch University Medical Centers (UMCs), also known as academic teaching hospitals. PSI offers researchers an infrastructure and standard procedures for the establishment, expansion and optimization of clinical biobanks for scientific research. To ensure patient privacy clinical data is pseudomized and carefully stored in a central database. Human biomaterials are collected according to nationally agreed standards.
PSI has stored more than 538,000 biospecimens with annotated clinical data of more than 30,000 patients (status December 2016). All these materials and data are available for anyone with a bona fide research proposal.
Application for research data and/or materials can be done via the PSI website.
How to Cite: Manniën, J. et al., (2017). The Parelsnoer Institute: A National Network of Standardized Clinical Biobanks in the Netherlands. Open Journal of Bioresources. 4(1), p.3. DOI: http://doi.org/10.5334/ojb.23