INTERNATIONAL BRAIN TUMOUR ALLIANCE (IBTA) AT
International Brain Tumour Alliance (IBTA) has just concluded a very successful
participation at the European Cancer Conference (ECCO 13) held at
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.
Mr Denis Strangman (
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.
advertising the IBTA’s international logo competition were distributed widely at
attending the ECCO conference IBTA Chair Denis Strangman visited the
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.
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
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.
were given at ECCO of confirmation of the Stupp therapy by trials in the
some discussion about the relevance of the MGMT methylated silencing test as a
predictor of patient success. Distinguished
researcher Martin J van den Bent (
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.
such moves in
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.
example, representatives of the Lilly company did not report on developments
with Enzastaurin at
front Dr Carpentier (
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 (
controversial area of the treatment of low grade tumours Professor Delattre (
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
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.
will evaluate its experience in
Thursday 3 November 2005-11-03
Contact: Denis Strangman (Chair IBTA) E-mail: firstname.lastname@example.org