Renal failure is slow, progressive destruction of kidney tissue and decreased renal function. The clinical manifestation is dependent on the seriousness
(stage) of the renal disease. National registries show a slow growth in the number of patients with chronic renal failure. This is in line with the global trend. In 2007 1,900 new patients began renal replacement therapy (dialysis or transplantation). At the end of that year this number had grown to more than 13,000 patients.
This is a little less than 0.1% of the population. The number of patients in the early stages of renal failure is much larger. Estimates from the PREVEND-study (a large scale population study) indicate that approximately 5% of the population belong in the category stage III-IV renal failure.
Nearly all kidney diseases lead more or less to renal failure; a disturbance in renal function. In the early stages chronic renal failure is asymptomatic, resulting in late diagnosis. In spite of the absence of symptoms in the early stages there is clearly an increased risk of heart and vascular diseases and this risk increases greatly in the later stages.
If the underlying renal disease is left untreated or if the renal failure is discovered too late, there is a great risk of the development of end-stage renal failure. Renal replacement therapy (dialysis or transplantation) is then necessary to prolong life. Unfortunately, with current medical knowledge, end-stage renal failure cannot always be prevented even in patients with early diagnosis and treatment. Medical treatment is primarily directed at reducing loss of renal function and delaying the need for replacement therapy. Besides this prevention and treatment of secondary damage to the heart and the vascular and skeletal systems is of great importance. In end-stage renal failure the goal of renal replacement therapy is to prolong life while maintaining quality of life.
Via the clinical data and biomaterial from the Parelsnoer Institute doctors and researchers obtain more insight in the development of renal diseases and the course of renal failure, also while patients are being treated. This could lead to better preventative measures and thus to better treatment of patients with renal failure. In the long term, new, customised treatment methods will be developed.
Furthermore partnerships will be created with other initiatives for primary and secondary prevention, such as large scale population studies as LifeLines and PREVEND (Prevention of Renal and Vascular Endstage).
Because renal failure presents regardless of the underlying renal disease, the choice was made for a comprehensive biobank. In this manner it is also possible, besides research into specific disorders such as cystic kidney disease and glomerular nephritis, to study transcendental aspects of renal failure. The Parelsnoer Institute offers a unique opportunity to link the existing national registries for dialysis patients (RENINE) and renal transplant patients (NOTR), in order to trace the complete course of the disease in patients.
There is also collaboration on a European level. The ERA-EDTA Registry (European Renal Association - European Dialysis and Transplant Association) here in the Netherlands carries out the European registration of patients with renal replacement therapy. The ERA-EDTA plays an important role for Dutch partners with regards to policy making. An example is the NephroQUEST Initiative (Quality European Studies), initiated by the ERA-EDTA Registration and sponsored by the European Union. The goal of this initiative is to set up a European network of good quality registrations. Another European initiative, the ReGenet consortium (Renal Genome Network), features a DNA-bank with vascular tissue and phenotypic data of more than 25,000 renal patients. The coordination of this initiative is also in Dutch hands. A further European partnership includes the EU subsidised Genecure project and on a national level there are partnerships with the Nederlandse federatie voor nefrologie en het Nefrovisie.