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IBTA E-Newsletter

Posted on: 04/29/2009

E-News April 2009
If you cannot read the text below go to the web version at:
Dear friend of the international brain tumour community
First documented glioma operation:
The IBTA has produced a 62-page booklet commemorating the 125th anniversary in 2009 of the first documented, modern-day surgery to remove a glioma in November 1884. Bulk copies of the booklet are available (subject to availability) for free distribution at oncology and neurosurgery and other relevant brain tumour scientific conferences, as well as patient conferences, on payment of the cost involved in freighting supplies of the booklet to your location from the UK. Contact IBTA Co-Director Kathy Oliver for further details.
The booklet contains a Preface by Emeritus Professor David GT Thomas of London, which can be viewed here, and a Glioma Timeline prepared by Dr Frederick G Barker II (Historian at the AANS/CNS Section on Tumors, USA), which can be viewed here. Ways of making the booklet freely available to individual brain tumour patients, families and caregivers, are being explored and will be advised soon on the IBTA website.
Trends in Central Nervous System Malignancies: The IBTA attended and had a booth at this conference, held in Budapest during 27-28 March. A copy of our 11-page report may be viewed here.
Clinical trials and unmethylated patients: there is a growing trend to test brain tumour trial participants for their methylation status and using that as a decision-making and stratification tool for further participation. We are concerned at what then happens to those patients whose tumour is unmethylated. The sponsors of the CENTRIC/CORE trials have come up with a useful solution and we commend it to other investigators involved with similar trials. We have released a background statement on this subject which can be downloaded from here.
Walk Around the World for Brain Tumours: The IBTA has again initiated this project for 2009, whereby individuals or groups undertake a brain tumour awareness-raising walk and contribute the combined distance covered to a symbolic global target of circumnavigating the world at the Equator five times (the equivalent of 200,000 kms). The Walk is now underway and concludes at the end of the 2009 International Brain Tumour Awareness Week (7 November).
International Brain Tumour Awareness Week is being held during 1-7 November 2009. Please advise us of any events which you are organising for the Walk or the Awareness Week and we will list them on the IBTA website. 157 brain tumour-specific and cancer-related organisations worldwide supported the IBTA’s awareness-raising projects last year. If you wish to be listed among the supporting organisations this year send an email to:
Forthcoming conferences: The IBTA will speak at and have a display booth at the combined 3rd World Federation of Neuro Oncology (WFNO) and 6th Asian Society of Neuro Oncology (ASNO) Conference to be held in Yokohama, Japan, in May (Booth 12). The IBTA has also been granted a space in the combined patient advocacy groups’ section of the ASCO meeting to be held in Orlando later in May (Booth 1901). Please visit our displays and make yourself known to the IBTA representatives.
Nursing article: Hanneke Zwinkels from the Netherlands had an article published in the most recent issue of Oncology Nursing Forum “Management of Temozolomide Toxicity by Nurse Practitioners in Neuro-Oncology” and will send a copy to interested people. She may be contacted here.
Brain tumour research funding: The eight North American private funding organizations comprising the Brain Tumor Funders’ Collaborative (BTFC) recently announced a new funding initiative aimed at accelerating development of non- or minimally- invasive methods for monitoring if, when, and how human brain tumors are responding to investigational therapies. The eight members of the Brain Tumor Funders’ Collaborative are: the American Brain Tumor Association, Brain Tumour Foundation of Canada, Children’s Brain Tumor Foundation, the Goldhirsh Foundation, the Ivy Foundation, the James S. McDonnell Foundation, the National Brain Tumor Society, and the Sontag Foundation.
EDM in UK Parliament:
Mr John Bercow (Chair of the UK Parliament’s All Party Parliamentary Group on Brain Tumours) initiated an Early Day Motion about childhood brain tumours. The text drew on the joint IBTA/UICC media statement on the same subject distributed worldwide in February and his motion has attracted 73 supporting signatures to date. You can access the EDM and list of signatures here.
Cancer Genome Atlas: Many readers will be aware of the pioneering genetic research undertaken on glioblastoma multiforme brain tumours as part of the Cancer Genome Atlas project. There was an update on that work at the recent American Association for Cancer Research meeting in Denver (USA) and this is a link to a report about that update.
Letter to CRUK: Cancer Research UK (CRUK) helped develop the chemotherapy temozolomide and has since received millions of pounds in royalties in connection with this therapy. A number of brain tumour patient groups, including the IBTA, wrote to CRUK recently seeking information on brain tumour-specific research which it has supported. The letter can be downloaded from here.
Italian earthquake: In recent weeks there have been graphic images of the devastation caused by earthquakes in L’Aquila, Italy. IBTA Co-Director, Kathy Oliver, was invited to speak at a brain tumour conference held there in 2006 in memory of Fabrizio Scotti after whose death from a brain tumour Il Fondi di Fabrizio was established by the Scotti family. Read more here.
Cancer conference Antalya, Turkey: IBTA Chair Denis Strangman attended a conference in March focussing on cancer in low and middle income countries (LMIC). Denis was seeking contacts who could help with the IBTA’s project to publicise the lack of treatment for brain tumour patients in these countries. You can read his report here.
Conveying bad news: The IBTA continues to be told of examples of where a poor prognosis for a patient has been badly conveyed to the patient and their family. In a recent example in a large city in a developed country, the patient was bluntly told by a junior surgeon “You have a glioblastoma brain tumour and you are unlikely to live more than fifteen months. Okay?” To which the distraught husband responded: “No, it’s not bloody okay!” Bad news of this nature should always be conveyed by an experienced and empathetic senior specialist.
Conferences: One of the most viewed webpages on the IBTA website is the list of upcoming scientific conferences of interest to the international brain tumour community. You can access the webpage here. A recent addition is information about the meeting of the Scandinavian Neuro-Oncology Society. There is also a webpage for patient-oriented conferences. Please submit details for listing to Chris Tse who looks after the directory for the IBTA.
Cost per QALY: The IBTA has made a submission to the UK National Institute for Health and Clinical Excellence (NICE) supporting conclusions made by NICE's Citizens Council in the Council's report on the question of interventions where the cost per QALY is above the threshold range of 20-30,000 GBP. The four-page IBTA submission can be downloaded from here.
Experimental therapies: An article appeared recently in the Journal of Clinical Oncology commenting on the action of Recentin in relation to brain tumours. The drug is presently undergoing clinical trials in a number of countries. The suggestion was that while the drug reduced brain oedema in a mouse model it did not reduce tumor growth. However, in the original work by Tracy Batchelor with patients with recurrent glioblastoma the trial showed tumour shrinkage in 56% of participants, as well as reduced oedema.
Meanwhile, the first named patient supply for Ark’s Cerepro (sitimagene ceradenovec) has been approved by the French Medicines Control Agency (AFSSAPS) following an application made by a neurosurgeon in the country.
Antisense Pharma’s Phase III trial of AP12009 (trabedersen), called the SAPPHIRE study, for recurrent or refractory Anaplastic Astrocytoma, has commenced recruitment of approximately 130 patients in 70 hospitals in Europe, America and Asia. See also here.
The US FDA’s Oncology Drugs Advisory Committee recently gave a positive recommendation in regard to Avastin (bevacizumab) for previously treated brain tumors. Virtual Trials President Al Musella was very much involved with this successful meeting. His presentation is available here. A briefing paper prepared by the FDA for the committee sounded a note of caution in regard to the relevance of standard MRI response criteria in the setting of VEGF inhibition, which is what Avastin targets. You can download the FDA paper from here. The FDA will advise its decision on 5 May. The IBTA has written to Roche headquarters in Basel, Switzerland, posing four questions in relation to Avastin and brain tumours and is awaiting a response.
Multi Disciplinary Teams: Consultant oncologist Dr David Levy (UK) is a strong advocate of the treatment of brain tumour patients by mutli disciplinary teams. This is a link to a synopsis of a presentation on the subject which he delivered at the recent EORTC/EANO meeting in Budapest and has been uploaded with his permission.
Rare cancers: IBTA Chair Denis Strangman was recently quoted in an article about rare cancers that was included in the magazine “Cancer World”, published by the European School of Oncology. He warned about the danger of the less common cancers, such as brain tumours, being overshadowed by the more numerous cancers and those that are suitable for screening. The article can be downloaded from here.
Mobile (cell) phones: Australian neurosurgeons Dr Vini Khurana and Dr Charles Teo and three other co-authors have published the results of a meta-analysis of the epidemiologic data about mobile phones and brain tumours, concluding that there is evidence of a risk between prolonged use and the development of an ipsilateral brain tumour. The article is available here.
MRIs and the EU: Mr Frank Boeye of Werkgroep Hersentumoren, the Belgian brain tumour patient group, reports progress on the European Alliance for MRI's campaign regarding Directive 2004/40/EC.  On 2 April "the European Parliament adopted MEP Frederique Ries own-initiative report on health concerns associated with electromagnetic fields, which calls for a derogation for Magnetic Resonance Imaging (MRI) from the scope of Physical Agents 2004/40/EC Directive on electromagnetic fields."  For further details download a media release from here.
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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