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IBTA E News April 2011
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Dear Friend
Bucharest conference: The IBTA had a display table at the EORTC/EANO “Trends in Central Nervous System Malignancies” conference which took place in Bucharest, Romania during 25-26 March 2011. An international faculty presented on topics at this well-attended meeting including, among others: “Glioblastoma – what are the next promising molecular targets?”; “The clinical management of diagnostic uncertainties in grade II and grade III tumours”; “Clinical management of medulloblastoma in adults – lessons and pitfalls”; “VEGF inhibitors for glioblastoma”; “Bevacizumab and recurrent GBM – the controversy between FDA and EMA”; and “End of life care in glioma patients – what are the issues?”. PDFs of the speaker and poster abstracts can be downloaded from the ECCO website here.
IBTA magazine: Publication of the 2011 edition of the IBTA’s “Brain Tumour” magazine is well advanced and we hope to have it available for distribution in the beginning of June. There are over 200 individual items, ranging from a single paragraph to articles of several pages, in this edition, with a broad range of topics and interviews. Brain tumour patients and caregivers who are unsure if they are on our database to receive a free posted copy should register their details here. If you received a copy of the 2010 edition in the mail then you are already on the IBTA database.
ASCO Conference: The IBTA will be represented in the ASCO-sponsored Patient Advocacy Booth (No 5005) at the Annual Conference during 3-7 June. Please call in and introduce yourself. The 2011 edition of the IBTA’s “Brain Tumour” magazine might be available for collection from the booth, depending on printing timetables. If it is not available selected reprints from the contents can be collected from the booth. The conference abstracts will be released publicly on the ASCO website at 6 p.m. (EDT) on 18 May. Prior to the Conference IBTA Chair Denis Strangman will visit Vancouver in Canada.
EU Clinical trials register: The EU Clinical Trials Register is now available publicly online.The Register website will provide the public with information held in the EU clinical trial database, EudraCT, which is used by national medicine regulatory authorities to support supervision of clinical trials. It was established originally as a confidential database and the information is being provided on a staggered basis. A recent search for glioblastoma revealed 53 trials. At first sight it is not as patient-friendly as the US international www.clinicaltrials.gov website in so far as one cannot readily identify the investigators and their contact details. The European Medicines Agency, which is associated with the register, is working with the US National Institutes of Health (which runs the US register), Health Level 7 International (a standards body) and the World Health Organisation, to harmonise the data sets on which the register is based. In 2008 the European Cancer Patient Coalition, of which the IBTA is a member, strongly recommended the inclusion of investigator contact details in the register framework.
Rare solid cancers: During 31 March – 1 April 2011 the European School of Oncology (ESO) held an educational event on “Rare Solid Cancers: an introduction” in Stresa, Italy, which the IBTA attended. Brain tumours represent a significant rare solid cancer and a presentation about them was delivered by Dr Riccardo Soffietti from Turin. An important “take home message” conveyed by Dr Gemma Gatta (Italy) from the event was that because of limitations in what ‘prevelance’ figures represent, ‘incidence’ is a better measure of the rarity of tumours. The slides for the presentations are freely available from the ESO website here. Click on the “Join Us” hyperlink for ClubESO and sign up. Once in, click on “Events”, then “Past events”, then the “Rare Solid Cancers” link.
Denmark: Bitten Naested and colleagues organised a very successful one day conference on 5 April in Copenhagen to launch a Danish brain tumour patients’ and caregivers’ group. The public meeting, attended by 320 people, was supported by Roche. IBTA Chair Denis Strangman addressed a later private satellite meeting where those interested in being involved in an on-going organisation met to discuss plans. Åse Rinman, founder of the Swedish patient and caregiver group Svenska Hjärntumörföreningen, was among the speakers at the public meeting.
Brain tumour centres of excellence: It has been suggested that the IBTA, as a non-partisan organisation within the brain tumour community, might care to create and maintain a list of brain tumour “centres of excellence”. The first question is – should the list be confined to centres that engage solely in treatment, those confined to research, or those that combine the two? The second and more difficult question is “Who defines what is a centre of excellence?” We would appreciate any comments on how we might go about implementing this project. Email: chair@theibta.org
NovoTTF-100A System: From the US FDA - The U.S. Food and Drug Administration (FDA) recently approved the NovoTTF-100A System, a new device, to treat adults with glioblastoma multiforme (GBM) that recurs or progresses after receiving chemotherapy and radiation therapy. “Recurrent glioblastoma multiforme is a devastating form of brain cancer that often eludes standard treatments”, said Jeffrey Shuren, M.D., J.D., director of the FDAs Center for Devices and Radiological Health. “The agency’s approval of the NovoTTF-100A System shows FDA’s commitment to innovative new devices that provide patients with other treatment options.” The company responsible for the system (Novocure) is also sponsoring an ongoing trial of the device with newly diagnosed glioblastoma patients. A company spokesman told the IBTA recently that Novocure is working diligently on the regulatory and compliance tasks so that it can offer the treatment for recurrent glioblastoma in the USA under the FDA’s approved indication.
Brain tumours and epilepsy: By linking hospital episode and other records researchers in Oxford (UK) have found that epileptic seizures can precede the development of a subsequent brain tumour by many years. The tumour, as an underlying cause, may not become apparent for several years after onset (of epilepsy). Compared to other people admitted to hospital the risk was 25 times as likely they would develop a cancerous brain tumour. See here for the abstract from the Journal of Neurology, Neurosurgery and Psychiatry.
Email communication between patients and nurses: In an interesting Norwegian study focussing on on-line patient nurse communication (OPNC) involving breast cancer and prostate cancer patients as part of a program called WebChoice the authors commented: “The study demonstrated that online communication can provide patients with a space for otherwise unmet questions and worries and that they will seek support from nurses online when given the
opportunity. Therefore, OPNC can be an important means and supplement to traditional health care in the effort to support patients to better manage their illness.”
Acknowledging the concern of some clinicians at the availability of direct email access to them by their patients, the study method placed nurses as the respondents and the patients were anonymous.
In the results of an IBTA survey involving 186 respondents which will appear in the forthcoming “Brain Tumour” magazine a majority of patients said they did not have access to a care coordinator and a disturbing 34% said they were unable to obtain specialist advice “about symptoms that concerned/concern you between scheduled check-ups”. The WebChoice system could be a useful addition in brain tumour treatment centres, in conjunction with the fairly healthy brain tumour email discussion lists that exist, several of which are listed here.
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
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-Directors address above, not to the registered office.