Current Status and Research Beyond Year 2010 in Balkan Endemic Nephropathy

In the first issue of BANTAO J, in 2003, I have presented the current research in Balkan endemic nephropathy (BEN) and associated upper urothelial tumors (UUT). As I stated in that paper, etiology remains the main problem for research in BEN [1]. Research of BEN in the nineties was hampered by the turmoil in the Balkans, especially in the former Yugoslavia. The Program Committee of the Interacademy Council of South-East Europe (IACSEE) at the second Program Committee Meeting, Belgrade, May 17, 2005, in order to accelerate research on BEN, a major problem in south east Europe (Bosnia & Herzegovina, Bulgaria, Croatia, Romania, Serbia), created the collaborative Project: BALKAN ENDEMIC NEPHROPATHY, with Professor Vladisav Stefanovic, as Project Coordinator. Project “BALKAN ENDEMIC NEPHROPATHY” started in 2005 with participation of investigators from 6 SEE countries (Bosnia and Herzegovina, Bulgaria, Croatia, Macedonia, Romania and Serbia) and 10 countries from Europe and North America. Meetings of the Project Network: Nis, May 2005; Belgrade, SASA, December 2005; Zagreb, October 22-26, 2006; Nis, April 2007; Lazarevac, May 2007; Belgrade, SASA, November 9-10, 2007; Brac, April 2008; Belgrade, SASA, April 17-18, 2009. Participants of the Belgrade 2009 Scientific Meeting agreed that the next Meeting will be held in Sarajevo, 5 May 2010, headed by Professor Senaid Trnacevic. In conclusion of the Belgrade Meeting, Round Table agreed that etiological and other studies must be multicentric with well defined cases and controls. Several questions are enumerated for further collaborative studies, to give definite answers (Radovanovic, Brac, 2008): Does BEN exist elsewhere?; Has BEN been spreading out of already identified foci?; Do maps of BEN and excessive UUT occurrence overlap?; Do we know current topographical distribution of BEN?; Would genetic research solve the problem of BEN etiology?; How to direct collaborative etiological studies?; Is the exposure to the unknown BEN agent currently going on?; How to assess it?; Which tests should be used to pick up possibly affected individuals in a screening of BEN?; Is mass screening of BEN ethically justified?; Should the population be mass screened for UUT?; How to identify cases outside of BEN foci?; How to make BEN research more methodologically sound?; Frequent sources of errors in the past were poorly selected cases and controls. Individual diagnosis of BEN may well be wrong. BEN cases: inhabitants of endemic settlements and from families with documented BEN cases (ill or dead), with exclusion of known interstitial and glomerular kidney disease. For any environmental (as well as most other) research, households should be considered as affected only if at least three members developed BEN and/or upper urothelial tumors. Two groups of control households should be selected – one in endemic and another one in a neighboring nonendemic settlement. None of the control household members should have had a kidney disease or urothelial cancer.