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IC Meeting in Copenhagen 3-5 June 2004  

European Society for the Study of Interstitial Cystitis (ESSIC) set up

At a second meeting in Copenhagen of European doctors (plus one from India ) with a special interest in IC, a European Society for the Study of Interstitial Cystitis (ESSIC) was finally set up. After being discussed for more than a year, the ESSIC is now a reality. Chairman of the executive committee is Professor Jørgen Nordling, vice-chairman Professor Magnus Fall, secretary Dr Pierre Bouchelouche and Professor J.-J. Wyndaele and Mr John Osborne as committee members.
The first afternoon of the meeting (Thursday) was spent on drawing up and approving the by-laws, not perhaps the most exciting activity, but nevertheless very necessary.


The Friday was entirely devoted to scientific presentations by the participants themselves.

Frank Smedt (Netherlands) gave a most interesting presentation about changes in the cell skeleton in cells from the bladder of IC patients.
He was followed by Kirsten Bouchelouche (Denmark) who presented the results of her studies into the release of chemokines (molecules with which cells communicate with each other) by detrusor cells in IC bladders.
Jukka Sairanen (Finland) summarised an epidemiological study into IC among women in Finland . The result was between 100 and 360 per 100,000 with 95% reliability.
Pekka Helin (Denmark) gave a lively talk on how the immune system works and was an advocate of the theory that cytotoxic T-lymphocytes play an important role in the development of IC.
Joop van de Merwe (Netherlands) followed with an overview of his on-going study into the association of autoimmune diseases with IC. In order to be able to compare the results with another study, he gave figures showing how frequently fibromyalgia, irritable bowel syndrome, inflammatory bowel diseases, systemic lupus erythematosus and rheumatoid arthritis are found in IC patients. He also discussed his hypothesis on the possible role of antibodies to the muscarinic M3-receptor in the development of Sjögren's syndrome, IC and PBS.
Paul Irwin (UK) then described how often diagnoses of IC were confirmed or refuted when diagnosing patients at his clinic on the basis of existing standards. In a second presentation, he explained how no difference could be found between patients with IC and OAB using a 0.3 M KCl potassium test. Not a single patient felt bladder pain during this test.
Arndt van Ophoven (Germany) presented the results of a prospective randomised study into the effect of amitriptyline (25-100 mg) on IC. This first prospective randomised study showed a clear improvement in the symptoms of IC patients in the O'Leary-Sant symptom score, pain and urgency.
Jukka Sairanen (Finland) reported the results of an open study into treatment of IC patients with cyclosporine. This study has now been published. A randomised study is still in progress, all patients have now started their treatment and definitive results are expected to be available around December. John Nielsen then presented his results from treating a small number of IC patients with 100 mg cyclosporine 2 x a day. Initial results of treatment using a low, safe dose of cyclosporine are promising, but the results of a randomised study are awaited before any evidence-based conclusions can be drawn.
Jørgen Nordling (Denmark) gave a presentation on the use of the Miniaturo-I electrostimulation device in IC patients.
Kirsten Bouchelouche (Denmark) then gave the results so far of her study on treatment of IC patients with montelukast. It was clear that randomisation of patients for treatment in a study can be seriously hindered when groups obtained at random by chance appear to be different.
Arndt van Ophoven (Germany) was interested in carrying out a study into IC during pregnancy. He has drawn up a draft questionnaire for this purpose and is open to suggestions. A second study into treatment with hyperbaric oxygen still awaits final conclusions.
Joop van de Merwe (Netherlands) described different types of criteria, what purpose they serve and how classification criteria can be drawn up for diseases that overlap with other diseases, despite different opinions by different experts concerning the essential elements of the disease. He pointed out the importance of making a diagnosis, not least of all to ensure that the patient receives the right treatment. He also mentioned the extensive experience in this respect with the diagnosis of systemic vasculitides and generalized autoimmune diseases such as Sjogren's syndrome.

Nagendra Mishra (India) followed with his presentation of concrete proposals for possible future criteria.

All presentations were followed by lively, open discussions.

On Saturday morning, Svend Mortensen told participants about the existing IC patient database. This could either be expanded to include IC patients in a European context or alternatively a new database could be set up. He emphasised that it was essential to consider very carefully how reliable data could be obtained bearing in mind the high risk of GIGO (garbage in garbage out).

It was then agreed that the approach to criteria as proposed by Joop van de Merwe should be adopted. There was a discussion based on the results of the first meeting last year in Copenhagen (see Nordling J et al. Primary Evaluation of Patients Suspected of Having Interstitial Cystitis (IC), European Urology 2004;45:662-9) and the proposals by Nagendra Mishra concerning which elements should be included in the analysis. A project group was set up for this purpose comprising Kirsten Bouchelouche, Svend Mortensen, Ralph Peeker, Nagendra Mishra and Joop van de Merwe.


The participants look back on a highly successful meeting that ended in practicable, concrete agreements on how to arrive at classification criteria in accordance with tried and tested methods. Jørgen Nordling should be warmly congratulated on his organisation of this excellent meeting.

Joop P van de Merwe

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