Maintaining the “Biobank in Nephrological Diseases in the Netherlands” (BIND-NL) is part of what is referred to as the “String of Pearls Initiative” (PSI). This initiative is the product of a unique partnership between eight University Medical Centers (UMC) in the Netherlands currently gathering clinical data and biomaterials from all of the participating institutions. The goal is to not only advance science but to improve patient treatment and encourage the development of new products.
The BIND-NL is one of nine groups concerned with medical conditions that PSI has chosen to study. The nine conditions or sometimes called “pearls” include renal failure, strokes, diabetes, hereditary colorectal cancer, inflammatory bowel diseases, neurodegenerative diseases, leukemia, rheumatoid arthritis, and congenital heart diseases. In the future, other activities will include other conditions.
Patients whose conditions fall within one of the nine conditions are asked to allow their clinical data and physical specimens to be included in the PSI database and biobank. The universities record details of the specimens and clinical data which are then submitted to the central PSI database.
For example, the renal research project has established the infrastructure for a database and biobank. Data and biomaterials are being collected to help nephrology researchers in the field, and tools have been developed to assess the quality of treatments.
To ensure that all the participating UMCs collect and record clinical data in the same way, the String of Pearls Information Model (PIM) has been developed. This Model contains standardized instructions for IT specialists at the hospitals so that a suitable data registration application can be created.
It is essential that all information be recorded in the same way in the central PSI infrastructure as only then can valid comparisons be made between data from different sources and reliable research results generated.
PSI has entered into a number of external partnerships with the national histopathology and cytopathology data network and archive, with LifeLines, a large scale and long term population study, and with the Mondriaan Project, an initiative started by the institute’s TI Pharma. Also, the project is studying whether to forge ahead with other links to other databases and biobanks both national and international.
Eventually, it is hoped that researchers will be able to improve the existing diagnostic and therapeutic strategies in chronic kidney disease, develop new diagnostic and therapeutic targets, new markers, new molecular targets, that will improve personalized medicine and provide a target population for clinical trials.
In addition, PSI is actively involved in developing the new European Biobanking and Biomolecular Resources Research Infrastructure (BBMRI) initiative to help enhance the value of biomedical sciences and create a more effective research environment for the discipline in Europe.
PSI is also a member of P3G, the Public Population Project in Genomics, an international consortium to promote cooperation between scientists investigating the relationship between disease and genetic factors.