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IBTA E-News January 2010

Posted on: 01/17/2010

IBTA E-News January 2010
If you are having difficulty reading this E-News please go to the Web version.
Dear Friend of the International Brain Tumour Community
Walk Around the World for Brain Tumours:
Congratulations to all those who took part in awareness and/or fund-raising walks as part of the IBTA’s “Walk Around the World for Brain Tumours” during 2009. Our target was 200,000 kms, or five times around the world at the Equator, and the walkers achieved a massive 226,590 kms. There were 92 walks in thirteen countries (Australia, Canada, France, Hong Kong, India, Italy, Japan, Lithuania, Netherlands, Spain, UK, USA, and Zimbabwe) and the 38,114 participants raised the equivalent of at least $3.4 m USD for local brain tumour charities and research organisations (no funding goes to the IBTA). Well done! Thank you to Tara Gent for maintaining our statistics. The Awareness Walks, which can take place at any time during the year, have now become an established event.
Awareness Week in 2010: We wish to thank those who responded to the survey about the preferred Awareness Week in 2010. While each of the first three weeks in November were supported there was a clear majority in favour of Sunday 31 October – Saturday 6 November 2010. Please mark those dates in your calendars. While we recognise that countries and local regions may have their own awareness days, weeks and months, the International Brain Tumour Awareness Week provides an opportunity to join in a global awareness raising exercise in addition to local events at another time of the year. Visit here, here and here for reports of activities held in 2009 by our supporting organisations.
Magazine name: We are still deliberating about the most appropriate name for the magazine that we plan to produce in 2010. Thank you for your participation in that survey question.
Clinical trials: In the United States two Senators put forward an amendment to a health insurance Bill before Christmas to ensure that brain tumour patients and others who participate in clinical trials have their routine care costs covered. The move was supported by the North American Brain Tumor Coalition. This had been a deterrent to clinical trial participation.
In Belgium the Royal Academy of Medicine is organising a conference in September about the “Future of Independent Academic Clinical Research in Europe”. One of its themes will be “the potential ethical problems of conducting clinical research”. Ethical and patient recruitment issues are emerging more and more in clinical trial design e.g. in regard to admission criteria based on age, performance status, and genetic testing, and what one offers to applicants who are screened out.
Responses to a survey conducted by the IBTA about an unnamed trial which might involve a voluntary neurosurgery delay of two weeks by suspected glioblastoma patients has produced a wealth of useful information. The survey was intended to obtain responses from patients and caregivers but it is obvious from the technical language of many of the comments that health professionals also answered the survey. The overall result was 60:40 in favour of the delay before we had to close the survey for reasons beyond our control and we apologise to those who wished to respond but could not do so. Comments by the respondents are accessible here. What is troubling among the responses is the implied suggestion that because of the failure of other approaches and the lack of existing therapies, all possible approaches should be tried for glioblastoma treatment even if there are ethical or other concerns.
GliomaEd: The very useful website has a new tutorial by Dr Timothy Rykin on “The Impact of Extent of Resection on Survival in Glioblastoma” and a new E-Monograph on “Combination Radiation and Chemotherapy: Targeting Therapy for Newly Diagnosed Glioblastoma”, both of which are useful and easy to follow.
Drug development: Ark Therapeutics Group announced just before Christmas that it had received notice from the European Medicines Agency (EMEA) that the European Committee for Medicinal Products for Human Use (CHMP) has adopted a negative opinion for Ark's marketing authorization application (MAA) for Cerepro, Ark's novel gene-based therapy for operable malignant glioma. The filing was based on results from the "904" phase III trial and Ark intends to provide data to support re-examination through the standard appeal procedure. See here for further information.
Also before Christmas a report on the EORTC study 26041-22041, which was a Phase I/II study on concomitant and adjuvant temozolomide and radiotherapy with Vatalanib in newly diagnosed GBM, noted that “The planned randomised phase II trial was discontinued right at its onset due to industry decision not to further develop this agent.”
GBMs’ “master control knobs”: This is a link to the abstract of an article in Nature (23 December 2009) reporting the discovery of two genes (C/ERB and Stat3) that, when simultaneously activated, work together to turn on hundreds of other genes that transform glioma brain cells into highly aggressive, migratory cells. (See this article in Sciencecentric for a more populist interpretation of the mechanism). The suggestion is that a combination therapy designed to silence both genes simultaneously may offer a powerful new way of tackling glioblastoma brain tumours.
Paediatric brain tumours: Dr Annie Huang and colleagues from the Hospital for Sick Kids at Toronto and elsewhere have identified a cluster of microRNAs in CNS-PNET (primitive neuroectodermal tumours) which may offer an attractive target for therapeutic intervention and as a diagnostic marker. The research was based on donations of 46 tumour samples of this aggressive brain tumour. This is a link to a summary of the article in Cancer Cell and to a media report of the research.
ospital for Sick Children at Toronto
Book review: We have added another review to the publications section of the IBTA website, which contains reviews of books about brain tumour patients and caregivers. It is a review of Kathleen Price’s story of her daughter Leslie’s journey with a brain tumour and her interaction with family, friends and health professionals. This is an excerpt from the review: “Leslie obviously had a wonderful sense of the ridiculous. Due to be discharged from a hospital she wanted to surprise her treating physician and dressed in a hairy gorilla costume and asked the nurse to summon the Doctor. Hurrying to her bedside he exclaimed after a brief look:  “Acute Vincristine Retrograde Syndrome!”
This is a link to excerpts from an unpublished book “Memoir of a Shakespeare Professor” by the late Professor Adam Cohen (University of Massachusetts, Dartmouth) who developed a brain tumour which forced him to refocus his studies: “How can I be a teacher, I wondered, if I can not even explain that I want a sandwich for lunch? The technologies and techniques on which I usually relied were unusable, my standard place in the world lost. Like so many of Shakespeare's characters I had been yanked out of a life in which my place was certain and thrown into a maelstrom, an Arden Wood of the mind and spirit, a Prospero's island where I had no idea who I was or where I belonged.”

Genesis conference: IBTA Co-Director Kathy Oliver was a plenary speaker at the ninth annual Genesis conference which took place in London on 10 and 11 December 2009.  This major biotechnology networking conference (hosted by the London Biotechnology Network and London First) featured a range of presentations covering imaging in drug discovery and development, preclinical strategies, next wave technologies, latest clinical trial strategies, bioengineering in medicine and other cutting edge topics.  Kathy spoke on "A Patient's Perspective" and shared the plenary podium with Lord Drayson, UK Minister for Science and Innovation, Professor Karol Sikora of Cancer Partners UK and Susan Windham-Bannister, Director, Massachusetts Institute for Life Science.  Kathy's presentation can be downloaded from here.

Neurological surgeons: The Society for Neuro-Oncology has drawn its members’ attention to a new initiative of the AANS/CNS Section on Tumors and the Congress of Neurological Surgeons entitled:  Controversies in NeuroOncology: An Academic-Community Forum. These consist of seven 90-minute on-line discussions (Webinars) about key aspects of brain tumour treatments. They commenced on 12 January and will conclude on 13 July. Participants have to register and are asked for details of their Board Certification and sub-specialty. Each Webinar costs $35 USD to join. Unlike the Virtual Tumor Board, which permits patient and caregiver observational (non-participation) status, it is unknown if the same applies in this case.

The initiative comes under the (US) Congress of Neurological Surgeons’ University of Neurosurgery. Another interesting resource they host is a NeuroWiki which contains vast amounts of editable basic information for neurosurgeons, including 108 items on brain tumours.

IBTA website: From time to time we look at the statistics for the IBTA website ( Visits to our listing of scientific and patient conferences remain high at 273 last month, closely followed (231) by our detailed report on brain tumour-relevant items at the COSA conference, at which Roger Stupp and Norman Laperriere participated. Conference organisers should submit details about forthcoming meetings to Chris Tse, who looks after this part of the IBTA website.

International conference: We note the proposed International Brain Tumour Research Conference to be held near Frankfurt during 24-26 March, 2010, which is an initiative of the Frankfurt and Heidelberg Brain Tumor Research Consortium. Preliminary information is available here. Topics include 1DH 1/2, the role of miRNAs in glioma biology, vaccination therapy for glioblastoma, etc.
There is also the 16th Neuro-Tumor Club Dinner Meeting which will take place on 19 April during the AACR Annual Meeting in Washington, DC. This meeting is organized by the Society for Neuro-Oncology. Topics include: Angiogenesis and the microenvironment in brain tumor biology and therapy, MicroRNAs as oncogenes or tumor suppressors in brain tumors, the brain tumor stem cell as target, etc.

Brain tumour logos: After the IBTA was formed in 2005 we conducted an international competition for an appropriate logo. There were 32 entries which can be viewed here. A panel of 10 judges in 2006 selected the design for the IBTA's logo. That left 31 brain tumour-relevant designs of a very high standard which are capable of a slight reconfiguration for use by other organisations. Since 2006 at least two groups have contacted the relevant graphic designers and negotiated a similar design for their organistaion. We will be happy to try and establish contact with individual designers should other brain tumour organisations wish to pursue one or other of the logo competition design concepts. Contact IBTA Co-Director Kathy Oliver.

Godlee booklet: Copies of the booklet about the first documented modern-day surgery for a glioma brain tumour, which was written and researched by the IBTA Co-Directors, have been distributed extensively. Individual copies are still available via the IBTA website and sufficient bulk copies are available under certain conditions for distribution at relevant conferences.

Thank you for your continuing support.
Denis Strangman (Chair and Co-Director)                                     
International Brain Tumour Alliance IBTA

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
The International Brain Tumour Alliance is a not-for-profit, limited liability company registered in England and Wales, registered number 6031485.  Registered office: Roxburghe House, 273-287 Regent Street, London W1B 2AD, United Kingdom.  All correspondence should be sent to the Co-Director’s address above, not to the registered office.
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