European EPS registry live! Submit your suspected EPS cases now.
Encapsulating peritoneal sclerosis (EPS) is a rare but serious complication of peritoneal dialysis (PD). This diagnosis needs to be considered in patients with a history of PD who are currently having or have experienced symptoms of recurrent partial or complete intestinal obstruction. The clinical assessment is difficult due to the insidious development of EPS. At this moment there is no clear test or radiologic investigation to detect EPS at an early stage. Risk factors for the development of the disease are incompletely understood. Genetic factors are thought to play a significant role in the development of this complication.
The EPS-registry is an international collaboration of renal centers in Europe aiming at collaborating on a global basis. The registry is hosted at Nefrovisie, an institute for the management of the quality of care in nephrology. The main aim of the registry is to improve the knowledge of the pathophysiology of EPS. Subsequently, uniform diagnostic criteria and management strategies will be developed. The registry is of significant importance for research projects focusing on EPS. These research projects are performed under the umbrella of REGENET (REnal GEnome NETwork).
The EPS registry is designed to register and follow patients with a possible and definite diagnosis of EPS. Treating physicians are encouraged to report a patient even if there is only a slight suspicion of EPS. It is intended also to store frozen samples of serum, plasma, blood (DNA) and dialysate of the patients being included in the registry.
The information gathered by the registry is reviewed by the steering committee of the registry on a regular basis. A yearly update, summarizing the data collected in the EPS registry, is being released on the website. Furthermore on the website information on EPS can be shared and a list of publications on EPS is made available.
On the website is a Q&A section developed where physicians can ask for advice regarding diagnosis and treatment.