IBTA e-News – March 2014

By 15th March 2014 September 6th, 2017 e-News Archive

Comprehensive listing of glioblastoma clinical trials: In a unique listing the (US) National Cancer Institute (NCI) has assembled a list of 165 “NCI-supported adult GBM clinical trials that are now accepting patients”. Each entry in the listing provides basic information about the trial with links to more detailed information, including a link to the relevant entry in the authoritative clinicaltrials.gov website. Comment – Our thanks to brain tumor activist Cindi Rixey Scott for drawing the attention of the brain tumour community to this list.

Your chance to help influence brain tumour research: James Lind Alliance Priority Setting Partnerships in the UK give those most directly affected by a disease the opportunity to influence the direction of future research. IBTA are partnering in the Neuro-Oncology Priority Setting Partnership. Patients, friends, relatives and health professionals are invited to shape the clinical research agenda by submitting questions about primary brain and spinal cord tumours through an online or paper survey (which is open to people outside of the UK as well). Questions that have not yet been answered by research will be prioritised by a Stakeholder Group made up of patients, clinicians and charity representatives. The ‘Top 10’ topics will be promoted to research organisations and funding bodies such as the National Institute of Health Research UK and the European Organisation for Research and Treatment of Cancer (EORTC). Further information here.

CyberKnife for five-year old: In a procedure undertaken last September but only revealed in February this year, twenty specialists were present at the UK Royal Marsden Hospital’s Chelsea site when doctors used a CyberKnife machine on the brain tumour of a five year-old boy who had previously undergone three operations for his tumour and had travelled to the USA for proton beam therapy. It was stated in a media report that the same hospital has now used the CyberKnife on eight children with cancer.

Air pollution and brain tumors: Researchers at Cedars-Sinai in the USA, led by Dr Keith Black, will receive a US $1m grant to study the effect of three chemicals on laboratory mice to determine if exposure causes molecular changes and interactions in the brain that are consistent with the development of brain tumors. The three chemicals are: naphthalene, butadiene and isoprene.

Decitabine and ependymomas: Researchers from Canada, the USA and Europe have identified the possible relevance of decitabine (Dacogen) to treating ependymoma tumors but caution that a properly conducted clinical trial is required and are seeking funds for that purpose.

Diffuse Intrinsic Pontine Glioma (DIPG): This is a link to a very clever and effective promotional video about the challenges of a DIPG diagnosis that is on YouTube.

Neuropathology of brain tumours: Consultant neuropathologist Dr Kathreena M Kurian from Bristol (UK) has made an eleven-minute educational video about the neuropathology of brain tumours which is available at this YouTube address.

More efficient classification of GBM tumours: Researchers in the USA have developed a new isoform-based molecular classifier for GBM which has “the potential to improve precision therapy and the selection of drugs with subtype-specific efficacy”. The system has a claimed 92% accuracy. Comment: The IBTA is anxious to ensure that molecularly-driven therapies do not result in recruitment or subsidisation discrimination against patients who are on the borderline of eligibility.

Deadlines and dates: The abstract deadline for the 46th Congress of the International Society of Paediatric Oncology (SIOP 2014) is 18 March. The meeting will be held in Toronto (Canada) during 20-25 October. The deadline for abstracts for the 11th Meeting of the European Association of NeuroOncology (EANO) to be held in Turin (Italy) during 9-12 October 2014, is 23 March. The 6th Annual Meeting of the Indian Society of Neuro-Oncology (ISNO) will be held in Lucknow during 11-13 April 2014. The 17th International Leksell Gamma Knife Society Meeting will be held in New York during 11-15 May 2014.

Ben Williams update: The March 2014 update of Dr Ben Williams’ 123-page patient resource Treatment options for Glioblastomas and Other Gliomas is available for download as a PDF from the Musella Virtual Trials website

Oligodendroglial tumours: An expanded analysis of a Radiation Therapy Oncology Group (RTOG) Phase III trial (9042) “shows the presence of the isocitrate dehydrogenase (IDH) gene mutation in anaplastic (malignant) oligodendroglial (OA) or oligoastrocytoma (AOA) tumors is associated with patients living longer when treated with chemo-radiotherapy (CRT) versus radiotherapy (RT) alone.”

Frontline bevacizumab: The presentation by Dr Mark Gilbert to the June 2013 American Society of Clinical Oncology (ASCO) meeting reporting on the results for the frontline addition of  bevacizumab in treating newly-diagnosed GBM tumours (RTOG 0825), has now been published in the 20 February issue of the New England Journal of Medicine. In the same issue, an article by Dr Olivier Chinot summarises the results of the AVAglio trial, while Dr Howard Fine discusses both trials in an editorial. This is a link to the Table of Contents for the relevant issue.

Optic pathway gliomas (OPG): In two studies published in JAMA Ophthalmology researchers found that using handheld optical coherence tomography (OCT) may help physicians to evaluate children with OPG, and that treatment with bevacizumab may greatly improve visual outcomes for children with OPG.

Humour and brain damage: An article by two neurologists, mostly in the context of the effect of brain damage on a person’s grasp of humour might also have relevance for brain tumour patients. They write: “Patients with focal damage restricted to a particular cerebral hemisphere show characteristic profiles of deficits for particular components of humour processing. Whereas patients with right hemisphere damage may be unable to discriminate between punchlines and non sequitur endings to jokes, those with left hemisphere damage tend to prefer coherent but unsurprising (and unfunny) endings. Individuals with agenesis of the corpus callosum may also have particular difficulty with narrative jokes, perhaps because these depend on inter-hemispheric integration of linguistic and non-literal metaphorical dimensions. Right hemisphere damage seems more likely to be associated with impaired ability to mentalise (theory of mind), while left hemisphere damage is more likely to affect the comprehension of humour that does not rely on mental inferences. A mentalising defect is also likely to contribute to degraded humour processing in frontotemporal dementia”.

Brain tumor incidence: A report by the American Cancer Society for estimates of childhood (birth to 14 years) and adolescent (15 to 19 years) cancers in the USA in 2014 indicates that brain and CNS tumours are in second place (21%) in the childhood category and in third place (10%) in the adolescent category. The estimated number of cases was 2,780. In 2010 the estimated number of survivors of these tumours was 59,083.

Meanwhile, in a recent publication of cancer incidence in NSW (Australia) for 2009 the authors reported that “incidence rates of brain cancer have not changed significantly over the last ten years” and identify the median age at diagnosis for 2009 as being 61 years for men and 62 years for women.

Pregnant mum with brain tumour: On 6 February a mother from Auckland (New Zealand) gave birth to a baby girl after the mother had been diagnosed with a malignant and inoperable brain tumour while pregnant. Specialists were careful to avoid damaging the unborn baby while giving the mother radiation therapy. Ironically, the mother was a former events manager at child cancer charity Cure Kids. Comment – This mother is not the first woman to have a successful outcome for her baby when faced with this difficult situation. There have also been a number of cases of women who become pregnant after the diagnosis of a brain tumour. In each case there should be support and encouragement for the mother and baby in order to ensure a successful outcome for both.

Adamantinomatous craniopharyngioma: Doctors in the USA have removed a brain tumour from a four-month old baby that contained several fully-grown teeth. The lead surgeon, Dr Edward Ahn, said there had been only five reported similar cases in these types of tumours (adamantinomatous craniopharyngioma) and were more commonly found in teratomas.

Meanwhile, in a US case involving a 30-year old woman who developed a craniophrayngioma, her determined sister has sent 3,000 letters to politicians, councilmen and mayors across Louisiana to identify what options were available to receive some sort of aid. Her letter-writing blitz generated nine responses, including three monetary checks and six promises to follow her sister’s case through disability once more. Comment – The IBTA is occasionally on the receiving end of similar letters seeking assistance, which we cannot accommodate because we do not dispense funds for medical or hospital costs. However, we do publish on our website and in our annual magazine a list that is probably the most extensive worldwide collection of links to country-specific brain tumour support groups.

Grant opportunity: Children with Cancer UK (formerly “Children With Leukaemia”) is launching a number of new initiatives specifically focussing on collaborative research which may be national or international but must be led by a clinical or non-clinical researcher based in the UK. They are also offering grants of up to GBP £5,000 (about $8,300 USD) to those working in the paediatric neuro-oncology field to facilitate visits to recognised centres of excellence for the development of national or international collaborations and/or training in new techniques. See here for further information and deadlines for applications. The group states on its website: “To drive progress in childhood brain tumour research, we have committed funding of at least £1.5 million a year for three years from 2014 to support new research.”

Imaging-related endpoints in clinical trials: This is a link to a media report about a recent workshop held in the USA on this subject and its relevance to glioblastoma clinical trials.

Cellectar: Enrolment has commenced in a ten-center USA Phase II trial involving Cellectar’s 1-124-CLR1404 positron emission tomography (PET) for newly diagnosed and recurrent glioblastoma. It has been suggested that the use of this imaging agent might assist with overcoming the problems of pseudoprogression and radiation necrosis.

UK patient information leaflets (PILs): An evaluation of twenty PILs across a range of UK randomised controlled trials (RCTs), using an evaluation tool made up of 59 items, resulted in a majority of leaflets scoring less than 50%. The authors note that “the traditional conceptualisation of informed consent in RCTs is as a behaviour relating to understanding rather than promoting informed decision. This may have led to the information contained within PILs being focussed on fact-based trial information rather than, for example, what trial participation might mean for that individual.” They suggest it is time for a re-think about the way in which decisions about trial participation and discussions about informed consent are supported. Comment – Patient advocates should be involved at all stages in the drafting of PILs.

A changed focus by PIL authors, along the lines suggested by the authors, might help to improve patient recruitment to RCTs.

Vaccine trial: Researchers in the USA have reported the results of an admittedly underpowered study of a novel vaccine developed from autologous dendritic cells loaded with cells from a unique allogeneic brain tumor cell line (GBM6). The patients had recurrent brain tumours and were aged from three years to seventy-one years of age. The vaccine was well tolerated and was associated with an immune response in a small sub-set of patients. In an incidental comment the researchers noted that a recent search had identified 25 clinical trials utilizing autologous vaccine for both high and low-grade glioma. The researchers also noted a potential correlation of MDSC (myeloid-derived suppressor cells) levels with response to vaccination.

AMG 595: A small Phase One study of 60 patients with recurrent glioblastoma has begun recruiting. The evaluation study involves AMG 595 which targets Epidermal Growth Receptor Variant III (EGFRvIII).

DNX-2401 and DNAtrix: After a merger between DNAtrix and VectorLogics in October 2012, DNAtrix has now received a product development grant of $10.8 m from the Cancer Prevention and Research Institute of Texas to further develop DNX-2401 which is an oncolytic virus in a Phase Ib trial in combination with temozolomide for recurrent glioblastoma.

Dopamine antagonists: Researchers in the USA have suggested, on the basis of research of cultured cells and mouse models, that FDA-approved dopamine antagonists, may also have potential as glioblastoma therapeutic agents.

Thank you for all 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

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