IBTA E-News September 2010
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Dear Friend of the International Brain Tumour Community
Neurosurgical trainees: The IBTA recently donated copies of its
publication "The First Documented, Modern-Day Brain Tumour Surgery for a
Glioma" to the European Association of
Neurosurgical Societies' training course on brain tumours in Halkidiki, Greece,
due to take place between 26-30 September. Each
delegate to the course will receive a copy of the IBTA's
booklet, which tells the story of British surgeon Rickman John Godlee's landmark operation on young brain tumour patient
John Mitchell (aged 25) on November 25, 1884 in London, UK. A limited
number of copies of this booklet are still available from the IBTA. See www.theibta.org
Dr Warren Mason: During a quick visit to the national capital Canberra, as part of visits to several hospitals in Australia, well-known Canadian neuro-oncologist Dr Warren Mason made several interesting points: There are many obstacles to the clinical application of tumour MGMT promoter methylation status. Assays are sometimes unreliable and results from different techniques can vary. Tumour methylation status can be heterogeneous, and can change at progression. The impact of methylation status on patient management and clinical decision making are unclear. He believes that IDH1 and IDH2 mutations are exciting new markers for gliomas, and have the potential for playing a role in patient management. He said that the results of the EORTC low grade trial has completed its accrual target and results may be available in 3 years and that the results of the Recentin Phase III trial are likely to be reported at ESMO and SNO.
Clinical Research: IBTA Co-Director Kathy Oliver recently
delivered a presentation in Brussels to a meeting called by the European Organisation for Research and
Treatment of Cancer (EORTC) to discuss
the future of independent academic clinical research in Europe. The text of Kathy’s presentation, in which she stated that “patient
involvement in the early design of clinical trials is crucial”, is available here. Many brain tumour
centres throughout the world participate in clinical trials initiated by EORTC.
Palliative care: Aline Nixon and Aru Narayanasamy in a study of UK brain tumour patients published this year, suggest that neuro-oncology patients may have unique spiritual needs compared to other patients with cancer “as they are not only facing a threat to their life but also to their personality and a potential ‘loss of self’.” The authors were assisted by well known consultant neuro-oncologist Dr David Levy (now in Canada) and nurse specialist Ms Helen Lee in recruiting participants for the study. IBTA Chair Denis Strangman referred to their research in a presentation on the “Existential and Spiritual Needs of Terminally Ill Patients” to the 10th Asian Regional Congress of CICIAMS (International Catholic Committee of Nurses and Medico-Social Assistants) held in Singapore during 3-5 September.
Awareness Week and World Walk: We continue to upload reports of proposed
and completed awareness-raising events to the IBTA website, the latest being a report of the
activities of our colleagues in Zimbabwe.
There are now more than 140 organisations worldwide who support the
International Brain Tumour Awareness Week (31 October – 6 November) and the
Walk Around the World for Brain Tumours.
SIOP: The 42nd Annual Congress of the Society of Pediatric
Oncology (SIOP) will be held in Boston during 21-24 October and one of our
supporters from Boston has kindly agreed to deliver copies of the IBTA’s “Brain Tumour” magazine for collection by those
participants who may have an interest in the subject and have not yet received
a copy. There are several
sessions specifically on brain tumours.
Childhood Cancer Month: President Barack Obama has proclaimed
September as Childhood Cancer Awareness Month. He stated: “While
survival rates for many childhood cancers have risen sharply over the past few
decades, cancer is still the leading cause of death by disease for young
Americans between infancy and age 15.” A further point to make is that in the
USA, Canada and the UK brain tumours have now overtaken all leukaemias
as the leading cause of paediatric cancer mortality in that same age group.
[For the USA data see this PDF document.]
EANO: The Meeting of the European Association of Neuro-Oncology (EANO) will be held at Maastricht in the
Netherlands during 16-19 September. The IBTA will exhibit (Booth No 4) at the
Conference and will have copies of its magazine available. Dutch and German brain
tumour patient groups will also be present. The IBTA has invited other European
patient groups that it is in contact with to supply a small number of copies of
their basic handouts to be made available from the IBTA booth to relevant
clinicians.
China: The IBTA had a display at the World Cancer Congress held in Shenzhen,
China, during 18-21 August. A report by IBTA Chair Denis Strangman can be
accessed here. A
topic that featured during the Congress proceedings is the proposed UN Summit on Non-Communicable Diseases
(NCDs) to be held in September 2011. The IBTA has
concerns that the Summit will focus mainly on efforts to achieve prevention of
these diseases (which includes cancer) but many cancers, particularly brain
tumours, cannot be prevented. While prevention is important there should also
be a focus on support and research.
Rare cancers: The European Society for Medical Oncology (ESMO) has announced that Mr. Robert Schaefer, Berlin, has been appointed to run the European Action Against Rare Cancers (EAARC) Secretariat. ESMO said in a statement that because of the importance of this initiative to ESMO, Mr. Schaefer will work directly with Alan Howard, ESMO Chief Executive Officer. The IBTA is a partner in this project which is supported by Novartis together with several other corporate organisations. ESMO is to be congratulated because we know of no other medical oncology group that allocates such a high priority to rare cancers, among which brain tumours occupy an important place.
David Bailey: Long-time brain tumour survivor, singer
and songwriter David M Bailey, who
was featured in the IBTA's magazine this year, has entered
hospital in his home state of Virginia.
GliomaEd: The
excellent GliomaEd website
contains two further educational items of interest to clinicians and patients
alike. The first is “Novel Applications for Bevacizumab
and Other AI Agents” and the latest is “Anti-EGFR Therapies in Malignant
Gliomas: Clinical Outcomes and Predictive Markers”. The second topic is not
listed on the GliomaEd website at the time of writing
but should be accessible via this hyperlink.
Registration is required.
Celldex
and Pfizer: Pfizer has decided
to terminate its brain tumour vaccine partnership with Celldex
Therapeutics. This means that Celldex will regain
full worldwide rights to rindopepimut (CDX-110) which
targets EGFRvIII in glioblastoma.
Cerepro: According to a news
report Ark Therapeutics “will continue efforts to out-license the
brain cancer drug Cerepro, the gene-based therapy
rejected by European regulators earlier this year.”
Belgium: IBTA Co-Director Kathy Oliver attended a brain tumour roundtable event
in Brussels, Belgium on 11th September. The theme of the meeting - which was
organised by the Oncology Centre Antwerp and Werkgroep Hersentumoren (WGHT
- "Study Group Brain Tumours") - was "Treatment and Support of
Brain Tumour Patients and their Families". Kathy presented on
"The Brain Tumour Patient: What's Important?".
Frank Boeye, President of WGHT, said that the meeting
had been organised in order to formulate a consensus about brain tumour
treatment in Belgium.
Thank you for your continuing support.
Denis Strangman (Chair and
Co-Director)
International Brain Tumour Alliance IBTA
www.theibta.org
Kathy Oliver (Co-Director)
PO Box 244, Tadworth,
Surrey
KT20 5WQ, United Kingdom
Tel:+ (44) + (0) + 1737 813872
Fax: + (44) + (0) +1737 812712
Mob: + (44) + (0) + 777 571 2569
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