The International Brain Tumour Alliance (IBTA) has just concluded a very successful participation at the European Cancer Conference (ECCO 13) held at Paris during 29 October – 3 November.


The IBTA is a relatively new group, which represents a patients’ and carers’ perspective on brain tumours, and was established at the WFNO conference at Edinburgh (UK) in May 2005.


IBTA chair Mr Denis Strangman (Australia) and secretary Mrs Kathy Oliver (UK) staffed an exhibit booth during the four-day ECCO meeting, which was attended by more than 10,000 oncology specialists. They also maintained a display and attended a three-day patients’ conference which preceded the ECCO meeting.


At the Conference the IBTA officials established contact with more than 80 individuals from 24 countries, many of whom expressed an interest in developing support mechanisms for patients and carers in their own country. Denis and Kathy made positive interventions at sessions of both conferences and the presence of the IBTA was acknowledged by leaders in the field of brain tumour research and practice.


Brochures advertising the IBTA’s international logo competition were distributed widely at Paris (see for details of the competition and a downloadable file of the competition brochure). The logo competition is being supported by educational grants from the Schering-Plough, Lilly, and Neopharm companies.


Prior to attending the ECCO conference IBTA Chair Denis Strangman visited the USA and Canada to further develop links with national brain tumour support and advocacy organisations.


Many support groups responded to Mrs Oliver’s request for examples of material for display at Paris and the thousands of participants had the opportunity to view material from: ABTA (US), NBTF (US), SDRT (UK), BTA (UK), BTUK, BTF (UK), TBTS (US), CBTRUS, BRAIN (US), CBTRC (UK), LUKE Frost BTRF (UK), Irish BT Support Group, BTRC (UK), BTF Canada, Frank Boeye (Belgium), PBTFUS, and the Central New Jersey Brain Tumor Support Group.


Both Denis and Kathy kept their eyes and ears open for anything that had a relevance to brain tumours. Information was often obtained by informal contact and chance meetings. For example, at one lunch break a South African radiation oncologist told Denis about a presentation he had heard at a recent conference at Brussels where US researchers reported on their experimentation in prior stereotactic radiosurgery on areas of the brain where it is anticipated a GBM tumour might migrate to. Neurosurgery takes place after this radiosurgery. This has demonstrated a survival advantage.


If one could give an overall impression of where brain tumour research is heading it is in the direction of combination therapies, particularly in conjunction with temozolomide (Temodar / Temodal) on its own or as part of the Stupp concomitant RT/TMZ approach.


Reports were given at ECCO of confirmation of the Stupp therapy by trials in the UK and Romania. Dr Beresford from Middlesex (UK) demonstrated a median survival improvement of five months. (The other advantage demonstrated in the Phase III trial was a dramatic increase in two year survival).


There was some discussion about the relevance of the MGMT methylated silencing test as a predictor of patient success. Distinguished  researcher Martin J van den Bent (Netherlands) emphasised three times in his presentation that the Hegi results which showed a correlation needed to be further validated before the test was incorporated into standard practice. In another presentation van den Bent reported that the comcomitant therapy was much more effective in patients who had undergone extensive resection, rather than a biopsy only.


The IBTA is particularly concerned at the possibility of jurisdictions seizing on this test as a means of denying patient access to State subsidised provision of the concomitant therapy for glioblastoma patients. Already the New Zealand PHARMAC agency is looking at the possibility of incorporating the test in any approval it might give.


To pre-empt such moves in Europe the IBTA has drafted a petition in both French and English to the European Parliament opposing this suggestion. Distinguished Italian neurosurgeon and EANO leader Dr Carmine Carapella has signed the IBTA petition.  At the same time the IBTA strongly supports the free choice of patients to arrange the test in a private capacity if they so wish and this is stated in the text of the petition.


These kinds of conferences occur in regular cycles and what is reported at them depends on the stage reached in the development of a promising new therapy. Consequently, not all research is reported, even though brain tumour activists might be aware of what developments are in the pipeline.


For example, representatives of the Lilly company did not report on developments with Enzastaurin at Paris but told the IBTA that a multi centre Phase III trial will commence in 2006 and will include 14 countries. Similarly, the Roche company was not promoting Avastin as a brain tumour relevant product at Paris, although it is known that they are working in this area.


On another front Dr Carpentier (France) reported that while numerous anti-angiogenesis agents are currently in pre-clinical development and early clinical trials, including VEGT and VEGFR anti bodies and small molecular inhibitors “… so far most of these drugs have shown disappointing results in Phase II trials.” Combination of these drugs, or association with radiation therapy or chemotherapy might increase their efficacy”, he said.


Dr Vogelbaum (US) reported that Tarceva (OSI 774) appeared to slow activity in a Phase II trial. Dr Gilbert (US) reported that Edotecarin had not demonstrated sufficient activity in a comparative trial and had been abandoned in that trial. Dr Dreseman (Germany) reported that Imatinib and hydroxyurea had been well tolerated and effective in a GBM trial and had shown a response rate of 20%.


In the controversial area of the treatment of low grade tumours Professor Delattre (France) emphasised the usefulness of genotyping as a helpful tool in their management.


In one presentation a German researcher reported how Boswellia acid might have been responsible for an improvement in a patient he presented as a case study. He seemed to half expect the audience to laugh but the gathering of about 150 of the top neuro oncologists in Europe listened to him respectfully. He explained this was a product (H15) used by German brain tumour patients. There were no published

trials to prove its efficacy although a trial had commenced but the company had run out of funding before publishing the results.


A number of researchers spoke privately to the two IBTA representatives at ECCO and indicated that they were excited about experimental research which they were undertaking but emphasised that they were bound by confidentiality agreements. It was as if they wished to assure the representatives of brain tumour patients and carers that there was good reason for optimism. In a similar manner a number of clinicians appeared to go out of their way to convey personal optimism and support. To once again prove that brain tumours do not distinguish who they affect other clinicians told of cases where brain tumours had affected members of their own family and close relatives.


The IBTA will evaluate its experience in Paris and discuss with its advisors about future opportunities to participate in these gatherings. Meanwhile, the competition for a search for a suitable logo for the IBTA has been launched and many of those who visited the IBTA stand at Paris have promised to distribute the competition brochures to their patients.



Thursday 3 November 2005-11-03

Contact: Denis Strangman (Chair IBTA) E-mail: