IBTA
E NEWS JULY 2012
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Dear Friend
IBTA
magazine:
We are reasonably confident that copies of the IBTA's "Brain Tumour"
magazine have now been distributed to recipients in the 106 countries where we
have contacts, with Spain and Australia being the last countries to be covered;
however, if you have not received a copy by now please go to this link and complete the
on-line form. Reaction to the 2012 magazine has been encouraging. See this link for readers' comments.
800 copies were distributed at the very
successful ISPNO (International Symposium on Pediatric Neuro-Oncology) conference held recently in Toronto, Canada.
The 602 research abstracts presented to ISPNO have been published under 18
categories in a supplement to the June issue of
the journal Neuro-Oncology and for the idly curious here
is a link to over 100 photographs taken at the
conference by the official photographer.
Experimental
furore:
A large amount of publicity has been generated by a case in the USA involving
two UC Davis neurosurgeons who introduced pathogenic bacteria into the
craniotomy wounds of several brain tumour patients as part of an experiment.
The story in the Sacramento Bee newspaper appears to be
the most extensive report and this is a link to a video of a news
report about the case. Even Nature magazine
bought into the debate.
The Chair of an Institutional Review Board (IRB) appears to have played
an important pro-active role and the episode is a salutary reminder of
the need for
appropriate review and oversight of clinical research, not just by
members of
an IRB, but also of the need to involve patient advocate
representatives
relevant to the area of research.
ASCO: As reported last
month, attendance at this year’s ASCO meeting appeared to be down on the 2011
figures. This has been confirmed in an analysis of attendee demographics
which showed there were 31,250 registrants (2012) compared with 31,800 (2011)
but it remains the largest international oncology meeting of its type.
International attendees still constituted the majority at 52%.
Dr Susan M Chang, who authored the Timeline
of brain tumor treatment developments reproduced in
the IBTA’s “Brain Tumour” magazine, has produced an audio Cancer.net podcast, under the aegis of
ASCO, which summarises research findings for brain tumours arising from the
2012 ASCO Conference. Dr Chang will visit Australia in August to speak at the
MOGA and COGNO ASM's and a Forum for patients and
families organised by BTAA.
New
European clinical trials regulation:
The
European Commission has finally published (on 17 July) its proposal for a
Regulation of the European Parliament and of the Council on clinical trials on
medicinal products for human use. The new Regulation repeals the highly
controversial EU Clinical Trials Directive 2001/20/EC which was criticised for
hindering clinical research across Europe because of its complex red tape. The
Regulation will impact on the conduct of clinical trials for brain tumour
patients. For example, Article 9.3 states that "the view of at least one
patient shall be taken into account" in
the assessment process. Additionally, the bureaucratic administrative
burden attached to submitting clinical trial proposals for assessment and
evaluation has become more streamlined. The IBTA signed a joint statement organised by Cancer
Research UK to support the proposal for a revision to the original Directive.
Dianne Traynor: The IBTA was shocked and
saddened to learn of the death last week of Dianne Traynor,
President and Chairman of the Board of the Pediatric
Brain Tumor Foundation
(PBTF) in the USA. The PBTF has supported
basic, translational and clinical research at more than 50 institutions around
the world. We extend our deepest condolences to Dianne’s family, friends
and PBTF colleagues on the loss of such an amazing, dynamic and inspirational
woman. This is a link to an
article that Dianne wrote for the 2010 IBTA Brain
Tumour magazine describing her work.
Deadlines: The
deadline for applications for the eight regional-based $2000 scholarships offered
by the Society for Neuro-Oncology (SNO) for
attendance at the SNO conference in Washington in November by those who work
and live outside North America, is 10 August. The deadline for late-breaking abstract
submissions for the meeting of the
European Association of Neuro Oncology (EANO) in
Marseille in September, is 28 July and normal
rate registration is possible until 31 July.
Alex’s Lemonade Stand Foundation has announced plans to release $10m in funding
for pediatric cancer research and there are various
deadlines for different categories. Applications for nurse researcher grants are
currently open and close on 1 August. The deadline for a patient-oriented EORTC
one-day seminar on
clinical trials to be held in Brussels on 13 September, is 31 August.
To tell
or not to tell: A UK couple has revealed that
they deliberately withheld information from their twelve-year-old child that
his inoperable brain tumour was terminal. After the child passed away in May
”his heartbroken family was consoled by the knowledge that Adam (the child) was
never depressed about the knowledge of his imminent death”. This is a difficult
subject and in some cultures families actually request doctors not to tell the
patient (usually an adult) that they have a terminal illness such as a brain
tumour. Meanwhile, a nine-year-old boy with an inoperable brain tumour and very
poor short-term memory, also from the UK, uses a "SenseCam" camera hanging from his neck to help him
remember what he has been doing each day. The camera automatically takes 2,000
pictures per day which can be retrieved to jog his memory.
Medulloblastoma: A
collection of articles about ground-breaking research into the childhood brain
tumour medulloblastoma appeared in the journal Nature during July. Two of the articles
are available on Open Access: here and here. An abstract is
available publicly for one other article. Generally, the research identifies
potential biomakers and gene mutations and indicates
therapeutic opportunities and, hopefully, could lead to more targeted
treatments. The research included the study of preserved brain tumours from
1,000 children.
MDxHealth and Merck KGaA: MDxHealth
SA has announced an
expanded collaboration with Merck KGaA for the
development and worldwide commercialisation of MDxHealth’s
MGMT diagnostic test PredictMDxTM for glioblastoma. Merck Serono is
developing its therapy cilengitide for use with
standard therapy for newly diagnosed glioblastoma
patients.
Lucathone: Spectrum
Pharmaceuticals Ltd has initiated a
placebo-controlled Phase II clinical trial of lucathone
together with standard therapy, for glioblastoma. Lucathone is "An orally administered small molecule (which)
inhibits topoisomerase II and AP endonuclease
and has been shown to sensitize tumor cells to
radiation and chemotherapy by inhibiting DNA repair." The trial
will take place in multiple sites in the USA and India. Meanwhile, a study by the
Drug Information Association, based around query rates, “suggests that the
quality of clinical trials conducted in emerging countries is consistent with
those conducted in developed regions”. Acknowledgement was made of several
limitations in the analysis.
DCVax-L immune therapy:
Northwest Biotherapeutics announced that its
German partner Fraunhofer IZI has received official
approval and certification from the regional and national regulatory agencies
for the manufacture of its DCVax immune therapy for glioblastoma patients.
Discriminatory
attitude: Speaking during a (US) House Rules Committee debate on the GOP’s bill repealing the Affordable
Care Act, Representative
David Dreier (R-CA) said that someone diagnosed with a
brain tumor should not have health care provided. He
added “I do believe that there can be a structure to deal with the issue of
pre-existing conditions”. Until they reveal themselves, usually by some catastrophic
event, it is ridiculous to categorise a brain tumour as a “pre-existing
condition” in this context and in the way that some parsimonious travel
insurance companies have.
Boswellia: We are
aware that boswellia is used extensively in Germany
and some other countries as an anti-inflammatory and dexamethasone
(Decadron)-sparing therapy. A health professional has
asked the IBTA for the best available English-language research involving boswellia and brain tumours. If you can assist please
email: chair@theibta.org
Fusion of
two adjacent genes: Scientists have discovered that in
a sub-set of glioblastoma some cases are caused by
the fusion of two adjacent genes. In mouse studies they found that drugs that
target the protein produced by the fusion can dramatically slow growth. See also.
Indonesia: In a news
report about the relatively novel introduction of a Gamma Knife machine in
Indonesia it was mentioned in passing that there are about 8,000 brain tumour
cases per year in the country and there are only 206 registered neurosurgeons.
Rare
genetic variant in Glioma:
Researchers have validated a link
between a rare genetic variant (rs78378222) and the risk of glioma
and identified an association between the variant and improved rates of
survival. See also.
Laser
system for neurosurgery: A European Union-funded
project (the MIRSURG project) has developed a
table-top all-solid-state prototype laser source which enables minimally
invasive neurosurgery by emitting an optical wavelength of 6.45 microns which
is said to result in reduced collateral damage.
Avastin injection into the brain: A three
year malignant brain tumour survivor from a Phase 1 trial at Weill
Cornell Brain and Spine Centre which involves intraarterial
intracranial infusion of Avastin into the patient's
brain appeared recently
on television and seems to be doing well.
Toca 511: MRI
Interventions, Brainlab AG and Tocagen
will align in
utilising the ClearPoint Neuro
Intervention System at selected sites involved with Tocagen's
clinical trial of the delivery of Toca 511 for brain
tumours. Meanwhile, the Musella Foundation has awarded a grant
to Tocagen to assist with the on-going clinical trial
of Toca 511 and Toca FC for
recurrent high grade glioma.
ALD-451: Cytomedix has announced the initiation
of a Phase 1 clinical trial involving ALD-451 for glioma
patients in collaboration with Duke University Medical Centre. ALD-451 is
"the population of autologus pluri-potent
ALDHbr stem cells isolated from the patients' bone
marrow using Cytomedix' proprietary technology".
The trial will also seek an initial description of the effects of the drug on neuro-cognition.
PET
imaging agent: Novelos
Therapeutics has successfully dosed three
patients in a Phase1-2 PET imaging trial of 1-124-CLR1404 (LIGHT) in patients
with primary or secondary brain tumours. The sponsors are hopeful that their
imaging agent will supplant FDG in clinical use.
ImmunoCellular: ImmunoCellular Therapeutics made several announcements in July
- (1) The FDA has approved a physician-sponsored investigative new drug (IND)
Phase 1 clinical trial of ICT-121 a dendritic-cell-based
vaccine targeting CD-133 in recurrent GBM patients. This is different from its
first vaccine ICT-107. (2) The Company will expand its current Phase IIb trial of ICT-107 in GBM patients who are HLA-A1/A2
positive, from 102 to 123 patients. (3) The Company announced the allowance of
a Japanese patent relating to its technology for these therapies.
Rare Cancers EU Access
Index. Because primary brain tumours are defined as a rare cancer, the IBTA
is a partner in the Rare Cancers Europe
(RCE) multi-stakeholder initiative. We would be grateful if readers of the IBTA
e-news living in the EU27 countries could answer some questions about
access to rare cancer care. Your answers will help to lay the foundation for
the first-ever Rare Cancers EU Access Index, comparing rare cancer care and
policies across the European Union. The survey, which will close on 16
September 2012, is conducted with the help of the Swedish Institute for Health
Economics. To take this
10-15-minute survey, please click on the following link.
International
survey on Pathology in Rare Cancers: In addition, RCE and the
European Society of Pathology (ESP) have jointly launched an international
survey on Pathology in Rare Cancers. All healthcare professionals from around the
world working in pathology are invited to participate in this survey (which
closes on 31 October 2012) by completing a short online questionnaire here.
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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.
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