The Parelsnoer Institute: A National Network of Standardized Clinical Biobanks in the Netherlands

Abstract

The Parelsnoer Institute (PSI) is a collaborative biobanking project of all eight University Medical Centers in the Netherlands which was launched in 2007. Basically, PSI consists of three dimensions: participating institutions, disease entities and a central organization. An executive board for operational management instigates collective strategic and tactic policies and a central team of PSI experts and advisors supports the researchers and the board in establishing and implementing standards and procedures. PSI offers researchers an infrastructure and standard procedures for the establishment, expansion and optimisation 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.Currently PSI covers fifteen large disease specific cohorts (the so-called 'Parels' or 'Pearls') and new 'Pearls' are being developed. The Parelsnoer Institute currently (December 2016) has stored more than 538,000 biospecimens with annotated clinical data of more than 30,000 patients. All these materials and data are available for anyone with a bona fide research proposal.

Dutch Parelsnoer Institute-Cerebrovascular Accident (CVA) Study: A Large Multicenter Clinical Biobank with Standardized Collection and Storage

“…This reuse of information minimizes registration burden while at the same time routine care procedures are taken into account. The architecture is in agreement with national and international classifications such as International Classification of Diseases and Related Health Problems (ICD-10), SNOMED CT and the Logical Observation Identifiers Names and Codes (LOINC®) [1]. For all stroke patients included in the Parelsnoer Institute-CVA Study, all predefined demographic and clinical variables including data on functional outcome are recorded as coded data via PRISMA and are sent to the central PSI database, a validated web based application (ProMISe) [19].…”

“…The Dutch Parelsnoer Institute-Cerebrovascular accident (CVA) Study is part of the Parelsnoer Institute (PSI), initiated in 2007 by the Netherlands Federation of University Medical Centers (NFU) [1]. PSI is a cooperation of all eight Dutch University Medical Centers (UMCs) and aims at building large prospectively collected datasets with uniform and standardized storage of biomaterials for complex diseases.…”

“…These SOPs are developed by biobank coordinators from all UMCs together and cover all phases of biobanking. ii) managing the clinical database for every specific disease, hosted via a web based application (ProMISe) [1,19] (Figure 1).…”

“…in case of incidental findings that need feedback to the patient or in case of data-linkage, de-pseudonymization can be performed by authorized personnel. The PSI IT infrastructure is in agreement with privacy and international security standards [1].…”

Nationwide comprehensive gastro-intestinal cancer cohorts: the 3P initiative

“…For POCOP and PACAP, tissue and blood sampling is organized in close collaboration with the Parelsnoer Institute, an existing national initiative facilitating biobanking for 17 different diseases, including esophageal/gastric and pancreatic cancer [11,12]. Fresh frozen tumor and normal tissue samples are taken from the surgical resection specimen of the primary tumor.…”