The Netherlands

The EPS registry in the Netherlands is a collaboration of the Dutch Kidney centres and the Hans Mak Institute. Main aim of the nationwide registry is to improve the knowledge of the pathophysiology of EPS. Subsequently, uniform diagnostic criteria and management strategies will be developed. This registry has the potential to be extended to other European countries. There is a already a close collaboration with the UK EPS registry.

The EPS registry is designed to register and follow patients with a possible and definite diagnosis of EPS. An inventory email questionnaire will be sent to all nephrologists in the Netherlands. We kindly ask all nephrologists to participate in this registry. When the diagnosis of EPS is considered, a research nurse will be deployed to the centre to gather all information on the patients. We encourage the treating physicians to report a patient even if there is only a slight suspicion of EPS. The information gathered will be reviewed by the steering committee of the registry. A yearly update, summarizing the data collected in the EPS registry, will be released on the website.

Mission Statement and Aims Dutch EPS registry
Structure Dutch initiative EPS registry
Medical Ethical Committee
Update may 2010

Mission Statement and Aims Dutch EPS registry

Mission statement
The EPS registry is an initiative to improve the knowledge on EPS and establish uniform management strategies.

Aims
Although incidence of EPS might increase. it is still rare with reported incidences vary from 0.7-3.3%. Main aim of the registry is increasing the knowledge on the development and management of EPS by creating a registry of EPS and possible EPS in Europe.

Aims:

1. Establish uniform definitions for diagnosis.


2. Development of relevant minimum dataset being feasible to collect on a European (or global) level.
3. Epidemiological analyses of these data regarding incidence, prevalence and outcome of EPS.
4. Investigation of association of possible patient and therapy related variables with the development of EPS. 
5. Development meaningful management protocols for addressing this severe complication.
6. Development of future clinical research areas

Structure Dutch initiative EPS registry

Steering committee

	Albert Schweitzer hospital	Drs. M.R. Korte (project leader)
	Erasmus MC	Dr. M.G.H. Betjes (project leader)
	Erasmus MC, Department of  Public Health	Prof. Dr. E.W. Steyerberg
	Erasmus MC, Department of  Public Health	Drs. H.F. Lingsma
	Hans Mak institute	Dr. E.W. Boeschoten
	Erasmus MC	Dr. M.W.J.A. Fieren
	UMC Utrecht	Dr. W.H. Boer
	UMC Utrecht	Drs. A.C. Abrahams
	Vrije University MC	Dr. F.J. van Ittersum
	Radboud University Nijmegen MC	Dr. R.G.L. de Sévaux
	University of Amsterdam	Dr. D.G. Struijk
	Dialysis Centre Groningen	Dr. R. Westerhuis
	Maastricht University MC	Dr. F.M. v.d. Sande

Medical Ethical Committee

The registry was reviewed by the Medical Ethical Committee of the Erasmus Medical Center in Rotterdam, in the Netherlands. The design of the registry was submitted to the Medical Ethical Committee for approval, which was not needed according to the definitions laid down in the WMO. This included the collection and storage of images, blood and dialysate samples for future investigations. However, the design of the registry (including the patient information leaflet) was critically evaluated and found to be in accordance with current good clinical practice guidelines.

Update may 2010

The EPS registry started in June 2009 with the first email questionnaire after a publication in the Netherlands Journal of Medicine in which we announced the founding of the EPS registry and called upon all nephrologists to cooperate (Korte MR, Boeschoten EW, Betjes MG. The Dutch EPS Registry: increasing the knowledge of encapsulating peritoneal sclerosis. Neth J Med 2009;67:359-62). In this email Dutch nephrologists were asked, whether they have had any suspicion of EPS during the last six months. Nephrologists were invited to submit their patients to the EPS registry, even when there was only a slight suspicion of EPS. After answering “yes”, the centres were contacted by the research nurse for evaluation and collection of the data.

Response rate
The response rate among the dialysis centres in the Netherlands was substantial. An overwhelming ninety-two percent of the centres responded to the questionnaire. In total 44 % of the nephrologists responded to the questionnaire. This resulted in 29 new suspected cases of EPS.

Reviewing cases
The suspected cases are in the process of being reviewed by the steering committee. The cases will be evaluated and ranked for EPS probability. During this process it has become apparent that a correct interpretation of the radiological investigations is essential for an adequate categorization of the cases. Unfortunately, the radiological reports sometimes do not contain all the information needed. Therefore, the relevant radiological images will be downloaded with the follow-up visits and reviewed by the committee.

International collaboration
One of the primary objectives of the EPS registry is the initiation of an international EPS registry, as this may substantially increase the number of EPS cases. This will facilitate research on risk factors involved and pathogenesis. During a recent meeting with European leaders in the field of peritoneal dialysis, an agreement was reached to start an international collaboration . An effort is now made to use the registry in Belgium, France and the UK. In the near future it will also be possible to submit cases from Italy and Germany. A report of this meeting will be published this year in Peritoneal Dialysis International.

In summary, the Dutch EPS registry has been successfully launched and the responsive rate of the dialysis centers is beyond expectation. This probably reflects the concern of Dutch nephrologists with EPS as a rare but serious complication of peritoneal dialysis, and is in support of the existence of a (inter-)national registry.
In may 2010 a new email questionnaire was sent to all the centres and nephrologists