Chairmen:
Friedrich K. Port and Nelson Mazzuchi.

Participants:
Paolo Schena of EDTA, Francois Berthoux of EDTA, Douglas Briggs of EDTA Registry (U.K.), Robert Wolfe of USRDS, Lawrence Agodoa of NIH (USA), Stanley Fenton of CORR (Canada), Takashi Akiba of Japan Registry, S.F. Lui of the Hong Kong Registry, Hans Schober of Germany's QuasiNiere Registry, William McClellan, Natan Levin and Philip Held of USA, Terry Feest and D. Ansell of UK Registry, Francesco Locatelli of Italy, Members of the Registry of Latin American countries (SLANH): Francisco González-Martínez, Emma Schwedt and Juan Fernández-Cean of Uruguay, Ana Maria Cusumano of Argentina, Douglas Urbina and Carmen Luisa Milanés of Venezuela, Hugo Poblete and Susana Elgueta of Chile, Manuel Cerdas Calderón of Costa Rica.

Brief outline of presentations and discussions:

Dr. Port opened the meeting thanking the participants for coming, noting that this is the largest international group meeting to date on this topic. He provided an outline of goals and potentially attainable conclusions of this meeting.

Dr. Mazzuchi added a suggestion that a core group of interested persons, such as a chairman and secretary, should carry the charge of this group during the intervals between the meetings.

Dr. Briggs presented on Successes and Failures of a Multinational Registry.
He described the values of the EDTA multi-national registry, particularly in past years, including findings of differences in outcomes by European region, pediatric findings, differences in the role of risk factors by geographic region (country). He concluded that 15 EDTA countries provide very complete information thus serving as an important core for registry studies. A multi-national scientific registry can thus be realized for these countries. Members are hoping that other registries may be joining for their own benefit, possibly with the assistance of the EDTA. The key for the EDTA registry lies in communication and collaboration.

Dr. Lui of the Hong Kong registry reported on the experience with his on line registry of ESRD patients. The Chinese registry is interested in expanding this registry approach to China. His data include detailed information on each dialysis treatment and information on conservative therapy. Feedback is provided on center specific data only the respective centers. He attributed their success on the combined implementation team of clinicians and information technology experts. They utilize the latest information technology.

Dr. Feest commented that the UK registry, currently being established, will also have on-line submission of data on a quarterly basis.

Dr. Schena described efforts over the last 4 years to develop an "International Federation of Renal Registries (IFRR)", as it was named during the last meeting at the ASN in Philadelphia. He stressed the following goals: [1] increase dialogue for standardization, [2] common terminology, [3] common methodology for analyses and [4] promotion of international collaborative studies. He proposed to start a web site for the IFRR and he was willing to head this effort. Work should start immediately among registries that have more than 90 % ascertainment of patients. Such registries should be listed on the web site. Regarding multi-center prospective observational international studies he proposed to [1] clarify financial aspects with hope for support from ISN, [2] address conflict of interest and privacy concern and [3] development of a publication policy in advance of such studies. Facilities should be selected at random with adequate data collection and attested accuracy.

There was discussion about nosology for comparable diagnoses and comorbid conditions. Dr. Port stressed the similarities between the terms used in the EDTA and USRDS.

Dr. Schober described the German experience with overcoming restrictive German laws protecting patient privacy. He described early results showing large regional differences within Germany.

Dr. Wolfe presented a perspective from the USRDS and mentioned the small fraction of cost for registry work as related to the per dialysis cost. He emphasized the need for strict patient confidentiality and for exact patient tracking. Dr. Schena commented that a patient ID card with electronic strip may be developed to allow complete tracking of a patient's therapy.

Dr. Agodoa presented the U.S. government's view of the USRDS.

In the ensuing discussions the ongoing International Dialysis Outcomes and Practice Pattern Study (I-DOPPS) was mentioned as a potential model for international studies using a uniform data collection instrument. [During the subsequent ISN Satellite symposium of ESRD throughout the World", Dr. Philip Held the principal investigator of the IDOPPS project was asked if he was willing to consider sharing the data collection instruments from this study with other countries (other than the 7 countries in 3 continents). He responded in the affirmative as long as independent funding for the data collection and analyses was available.]

The meeting concluded with the following agreements:

1. A web site for IFRR will be developed (by Dr. Schena). This web site should encourage comments. Renal registries should point to this web site in the future.
2. Drs. Schena, Port and Mazzuchi will serve as the core group for the IFRR as chairmen. They may choose to form additional small working groups.
3. The IFRR will approach ISN for financial support.
4. The next meeting will be arranged during the next ASN meeting this fall in Miami Beach.

The meeting concluded at 18:15 hours (after over 3 hours)

Informal discussions followed during the reception and dinner and during the following two days of the ISN Satellite Symposium on "ESRD throughout the World: Morbidity, Mortality and Quality of Life".