Welcome to BT Buddies

Founded in March 2009 Brain Tumour Buddies is a national charity committed to providing information and support to anyone affected by a high grade brain tumour in the UK.

Our website provides in-depth, accurate and up-to -date information on all aspects of dealing with a brain tumour and has been compiled from a wide range of sources. If you can't find the information you are looking for please contact us and we will do our best to help.

We also offer support to patients, carers, relatives and friends in a variety of ways including in our forum, via email and on our Facebook and Twitter pages.

BT Buddies is able to continue providing information and support thanks to kind donations and generous fundraisers. Funds raised for BT Buddies also go towards funding research into high grade brain tumours.

If you, or someone you know, is interested in fundraising for BT Buddies you can contact us at fundraising@btbuddies.org.uk or call 0845 459 4101. We will also be launching a new section on the BT Buddies website in the next couple of weeks which will include information on how you can raise funds for BT Buddies, resources to help with your fundraising and suggestions for events you can take part in. Watch this space!

Latest news...

  • PDF
  • Print

Data pooling in biobanks: The BIOPOOL project

  • Wednesday, 20 February 2013 08:52

A European consortium of medical, research and higher education institutions is developing a network for banks containing digitalised images of human tissue—"biobanks"— which will help doctors to diagnose different types of possible cancerous tissues taken from patients' biopsies in a shorter time.

The seven partners across four European countries, Spain, the United Kingdom, Netherlands and France are developing the project, known as BIOPOOL, with a budget of €2,500,000 from the European Commission.

"The network will enable clinicians to compare the image of a biopsy for a patient with biopsy images of a large number of other patients across Europe," explained Francesco Moscone, Professor of Business Economics at Brunel University, west London, who is responsible for the business impact of this project.

"The benefits mean that there would be a faster and more accurate diagnosis of diseases, thereby preventing, or reducing, the need for multiple invasive tests."

"Fast and accurate diagnosis will also help in identifying the more appropriate medical treatment, as well as reduce the length of hospital stay."

The existing biobanks are organised collections of biological material and associated health information, for medical-scientific research and diagnostic purposes. In the recent years, biobanks have started digitalising their material, by scanning their samples and storing images and associated information in databases.

But the digital images are usually collected in various different formats, and stored in separated databases and facilities. While image collections carry very valuable knowledge in several fields, their exploitation requires tools to gather, access, visualise, and process large images.

Professor Moscone added: "From the point of view of medical research, the large amount of data shared within BIOPOOL will allow the scientific community to conduct more meaningful clinical trials, especially with respect rare diseases."

"The use of such interconnected sources of data is very promising, as it is expected to reduce diagnosis time and related costs," he said. Roberto Bilbao, Director of the Basque Biobank for Research and coordinator of BIOPOOL project explained that the project involves a significant number of challenges, both technical and non-technical.

It manages very large images, as digitalised bio-images are stored in huge files, even reaching 10-15 GB per image.

The scheme will aggregate data from biobanks until August 2014.

###

Notes to Editors:

BIOPOOL will offer services such as on text- and image-based search queries, region-of-interest extraction and automated pathology information extraction for specific types of cancers. It will provide tools for the interconnection of different biobank digital resources, using standard communication protocols. The use of these protocols will allow acquiring, storing and exchanging images and associated data. The project will use storage formats such as OME-XML, OME-TIFF, that are compatible with existing systems. In order to include already existing images, auxiliary modules will be developed to convert images into standard formats.

The challenges include scalability problems and different acquisition protocols for different types of tissues. Furthermore, the comparison between different images of the pool is very complex due to different scales and formats of images, and the biological variability of samples.

The partners involved in the project are: Basque Biobank for Research, Tecnalia Research & Innovation, Emedica SL, Cultek SL (Spain), Pertimm SAS (France), Brunel University (United Kingdom), and Erasmus MC (Netherlands).

For further information please visit the website www.biopoolproject.eu

  • PDF
  • Print

GPs refer eighty per cent of suspected cancers after two visits

  • Wednesday, 20 February 2013 08:30


Doctor and patientMore than 80 per cent of patients suspected of having Cancer are being referred by their GP in the first two consultations, with more than half being sent to see a specialist at the first appointment, according to new research published in the British Journal of Cancer.

A group of researchers from the universities of Cambridge, Durham and Bangor looked at data from over 13,000 patients in order to measure the promptness of cancer diagnosis in primary care. They found that 82 per cent of people were referred after two visits, with over half of patients (58 per cent) referred to a specialist after the first visit.

The study has also revealed that some cancers are proving harder to spot in the first few consultations, such as lung cancer and myeloma. This may be because they often produce symptoms that are common and not unique to cancer, so can be mistaken for less serious conditions.

The findings show that, the more consultations a patient needs, the greater number of weeks between first presentation and referral. With most of the patients who have these harder-to-spot cancers, it takes longer before there is a suspicion of cancer and they are seen by hospital specialists.

Dr Georgios Lyratzopoulos, study author and National Institute for Health Research post-doctoral research fellow working at the Cambridge Centre for Health Services Research, said: “These results show the progress we’re making in spotting cancer at the earliest opportunity. We now understand the typical symptoms of some cancers, like breast and melanoma, very well and that helps doctors to spot them quickly.

“Other cancers have less typical symptoms, making them more difficult to recognise straight away. Not suspecting cancer early enough can be stressful for patients and their relatives so understanding the symptoms of these cancers better is where we need to be making greater research efforts to help spot the disease earlier.”

Last year, the Royal College of General Practitioners (RCGP), in partnership with Cancer Research UK, launched a five-year programme to improve early diagnosis of cancer in general practice.

Professor Greg Rubin, the RCGP and Cancer Research UK clinical lead for cancer* and co-author of the research, said: “We’ve found that most patients who go to their GP with cancer symptoms are being promptly referred to a specialist. NICE referral guidelines have helped people with classic symptoms to be seen more quickly but, for patients with less typical symptoms, the decision to refer isn’t always as simple.

“Reducing the number of pre-referral consultations can result in a more timely diagnosis of cancer. We need to consider ways of making the process of primary care assessment even smarter, for instance by wider use of clinical decision support tools or more efficient investigation pathways.”

Sara Hiom, early diagnosis director at Cancer Research UK, said: “These findings are encouraging but there is still room for improvement. Progress is clearly being made but one in five people have to make more than two visits to their GP, although it’s not surprising that this is usually for those cancers that are harder to spot. And we know for some people, difficulty making an appointment can be a barrier to going to the GP in the first place.

“Cancer can be treated more effectively when diagnosed early, so we need to make every effort to support GPs in getting the disease consistently diagnosed more quickly and accurately. But it’s also important that we all act on any persistent health changes that concern us and have the confidence to go back to our GPs if problems don’t clear up after an initial visit.”

  • PDF
  • Print

Radiotherapy 'needs to be modernised' in Europe

  • Wednesday, 20 February 2013 08:29

There are differences in radiotherapy provisions across European countries, a study has shown

Access to Radiotherapy varies dramatically between countries across Europe, according to a study led by the International Atomic Energy Agency (IAEA) in Austria.

With Cancer incidence on the rise in Europe, the findings indicate that some countries have too few radiotherapy machines to ensure all patients receive adequate treatment.

Every year 3.2 million people are diagnosed with cancer in Europe - in the UK alone there were more than 320,000 cases in 2010. Experts suggest that around half of patients diagnosed with cancer could benefit from radiotherapy as part of their treatment.

Using the Directory of Radiotherapy Centres (DIRAC's) records of radiotherapy facilities, the IAEA study highlighted that several western European countries have too few machines to meet the need for radiotherapy treatment.

Based on the number of people they estimated could be treated with each machine, the authors identified what percentage of patients with cancer in each country who would not have access to radiotherapy.

In the UK and Germany, the results showed that 21 per cent of patients are not offered radiotherapy. Austria's figure for unmet need followed at 20 per cent, then Portugal (19 per cent) and Italy (16 per cent).

Nordic countries, Switzerland, Belgium and the Netherlands were found to be more well-equipped to meet treatment demands.

While eastern and southeastern European countries were found to have the greatest need to modernise and expand equipment.

It is hoped that the research, which was based on information from the Directory of Radiotherapy Centres (DIRAC) database, will help countries to meet growing demand for radiotherapy by allowing them to make comparisons with other nations for the first time.

The study also looked at how services were organised across the different countries. Although a majority of 28 out of 33 countries split radiotherapy machines across a range of centres, nations like Britain and Sweden adopted a more centralised approach, with between four and 10 machines at each centre.

The authors said that the "fragmentation" of the services could affect the "economic burden of radiotherapy and its quality".

Though they cautioned that their study did not look at the impact that these different approaches have on cancer outcomes, they said their results warrant further investigation.

Hilary Tovey, senior policy manager at Cancer Research UK, said the research provided a useful snapshot of radiotherapy services across Europe.

She added: "We already know that more capacity is needed in the UK to ensure patients are not missing out. In England alone we need to double the number of linear accelerator radiotherapy machines over the next four years. At over £1million a machine this could cause an enormous headache for the NHS if it is not properly planned for.

"Radiotherapy can help to cure some cancers. All patients should have access to the best radiotherapy for their cancer across the UK. That's why we'll continue to call for this important service to be given the priority it deserves."

The study is published in the Lancet Oncology.

Copyright Press Association 2013

  • PDF
  • Print

IBTA E NEWS FEBRUARY 2013

  • Thursday, 14 February 2013 11:11
  • Last Updated ( Thursday, 14 February 2013 11:13 )

Important dates and deadlines: Rare Disease Day is 28 February. All brain tumours are categorised as "rare" or "less common" cancers and hence are "rare diseases". 28 February is also the deadline for the regular rate fee for those planning to attend the EORTC-EANO-ESMO Trends in Central Nervous System Malignancies Conference in Prague on 22-23 March. Abstracts for the 19th Neuro- Tumor Club Dinner meeting at the AACR Annual Meeting are due by 8 March. The final RSVP for the dinner meeting is 1 April. Early registration deadlines for the combined ASNO/ISNO meeting in Mumbai during 21-24 March are 20 February and 10 March. The Editor-in-Chief of the SNO journal Neuro-Oncology Dr Alfred W.K. Yung retires at the end of 2013 and applications for the position close on 31 March. The early rate registration date for the European Cancer Congress 2013 is 9 April and the abstract submission deadline is 17 April. The IBTA will have displays at both the Prague and Mumbai conferences and will distribute copies of its 2013 " Brain Tumour" magazine subject to it being printed in time.

Highly eloquent gliomas: Neurosurgeons at the Department of Neurosurgery, Klinikum rechts der Isar, Technische Universität, München, Germany, have reported on the successful resection of 47 supratentorial gliomas which were primarily evaluated to be non-resectable at another neurosurgical department. Techniques used included pre and Intraoperative brain mapping and monitoring (IOM) by motor evoked potentials (MEPs). Median survival was 14.8 months. Four patients had a new motor or language deficit which remained permanent.

Predicting brain tumours: Northwestern Medicine (USA) researchers have developed a new method for predicting and monitoring an individual patient's brain tumor growth. The method, which the researchers hope to offer as an iPad app or upload to a website, uses a personalized patient-specific approach that accounts for tumor features such as 3-dimensional shape, density and growth rate. It could enable rapid assessment of whether or not a therapy is working.

Meningiomas: An international team of researchers has identified four new genetic suspects to add to the already-identified neurofibromin 2 as being relevant to the development of meningiomas. This may lead to personalised medical therapies for meningiomas which currently are primarily managed surgically. See here for abstract of their article in the journal Science.

Research developments: Researchers at the University of Michigan have reported that a Diffusion abnormality index (DAI) shows promise as an imaging biomarker to measure brain tumor response to radiation therapy ... Researchers have found that the molecule TIC10 had potent effects against glioblastoma in mouse models. It activates the gene for a protein called TRAIL (tumour- Necrosis-factor-related-apoptosis-inducing ligand) but other researchers are sceptical about TRAIL-based strategies ... In a review of the literature researchers from Kazakhstan have discussed the role of infectious agents in the carcinogenesis of brain and head and neck cancers and possible novel approaches ... Research at the University of Mississippi has identified two molecules miR-7 and KLF4 that "may serve as biomarkers or therapeutic targets for brain metastasis of breast cancer" ... Researchers in Queensland (Australia) have discovered a protein EphA3 present in about half of all cases of GBM. An antibody treatment is already undergoing trials in leukaemia patients in the USA. The research is published in Cancer Cell ... A report arising from an EORTC-sponsored meeting about brain Metastases was included in a selection by the Editor-in-Chief of twelve key articles appearing in late 2012 in the European Journal of Cancer. The report (which can be downloaded from here) was authored by Matthias Preusser and others.

The future of QALY: A controversial European proposal to do away with QALY (Quality-adjusted life years) and substitute a "cost per remission" approach might pose challenges for new therapies directed against brain tumours. Health Technology Assessment (HTA) agencies have adopted different methods of evaluating and approving subsidisation for new brain tumour therapies and have been open to arguments about the absence of alternative treatments and the lethal and "orphan" nature of the disease. The "cost per remission" approach - subject to further explanation - appears to focus on an aspect of disease management that is not common in brain tumour experiences. Rather than narrowing the focus of HTAs they should be encouraged to adopt a broader perspective e.g. taking into consideration concepts such as the likely beneficial effects of extended survival and improved Quality of life not only for patients but for their caregivers and family.

Grief and depression: Controversy has arisen over plans to revise the criteria for major depressive disorder in the Diagnostic and Statistical Manual of Mental Disorders 5 (D.S.M. 5) to be released in May 2013. Critics fear that depression may become overdiagnosed because of the proposed removal of the "bereavement exclusion" which cautioned against diagnosing depression in someone for at least two months after loss of a loved one, unless that patient had severe symptoms like suicidal thoughts. The nature of the brain tumour journey can cause depression and anxiety disorders not only in patients but also among caregivers and family members.

Neuro-oncology patients and spiritual needs: A survey of nurses who had looked after neuro-oncology patients by University of Nottingham (UK) researchers has found that while there is an awareness of the spiritual needs of patients and their relatives there are questions as to whether or not nurses are the most appropriate professionals to support spiritual care.

Paediatric patients: A review in the Lancet Oncology journal advises using molecularly targeted therapies with pediatric cancer patients only in the context of a clinical trial. "The growth of cancer cells isn't that different than a growth of a 7-pound baby into a 210-pound teenage linebacker. Now, you shut down those growth pathways in an adult and it might not be a big deal, but you shut down those same pathways at a critical time in childhood development and you can have real problems", says Dr Lia Gore from the University of Colorado Cancer Center.

Neuromuscular assessment: Researchers at the Wyss Institute for Biologically Inspired Engineering at Harvard University, the Beth Israel Deaconess Medical Center (BIDMC), and Hebrew SeniorLife, Boston, recently completed the first clinical study of a new rapid neuroassessment device they developed to quantitatively measure neuromuscular performance. It involves a person using a stylus to follow a moving target around a circle on a computer tablet. They now intend to study its use for groups of people with neuromuscular pathologies, such as those who suffered concussions or have multiple sclerosis. Asked by the IBTA's E News if they planned to study its potential use with brain tumour patients they said they had not but are happy to talk with anyone who is interested. Contact Dr Lily Kim ( This e-mail address is being protected from spambots. You need JavaScript enabled to view it )  or Dr Leia Stirling ( This e-mail address is being protected from spambots. You need JavaScript enabled to view it ) at the Wyss Institute.

New book: This is a link to a 3-minute You Tube video interview with Dr Alyx B. Porter of the Mayo Clinic who is the co-author of a new book for patients Navigating Life with a Brain Tumor. It has been published in conjunction with the American Academy of Neurology as part of the Neurology Now book series. The IBTA has not yet seen the book but plans to review it in the near future and will upload a review on its website to join fourteen other brain tumour-relevant books that have been reviewed previously.

African-American and white brain tumor rates: Comparisons of brain and CNS tumor incidence and death rates between African-Americans and whites for 2005-2009 show higher rates for whites in both measurements and for both sexes but there is no discussion of the findings.

ASCO International: ASCO (American Society of Clinical Oncology) International has announced a commitment to doubling its international program over the next four years. Additional priority areas include: oncology training for non-specialists; innovation grants; and virtual mentors. The forthcoming issue of the IBTA's Brain Tumour magazine contains several articles about the challenges (and rewards) of undertaking brain tumour work in developing countries.

Company developments:  The Children's Hospital of Philadelphia (CHOP) and BGI-Shenzhen in China have signed a formal agreement to collaborate on research into next-generation sequencing and analysis of pediatric brain tumours, in support of the Childhood Brain Tumour tissue Consortium (CBTTC). Novocure has launched a website dedicated to its glioblastoma clinical trial.

Thank you for all 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
  • PDF
  • Print

Belfast cancer facility 'will boost research and patient outcomes'

  • Thursday, 10 January 2013 21:24

A new integrated cancer research and treatment facility based at Queens University Belfast will boost patient outcomes and offer new levels of research into the disease, experts have said

A new Cancer research and treatment facility in Belfast is being tipped to improve outcomes for thousands of people with the disease.

The integrated laboratory, the first of its kind across the UK and Ireland, is based at Queen's University Belfast.

It is the result of a partnership between Queen's Centre for Cancer Research and Cell Biology and the Belfast Health and Social Care Trust.

Professor Nic Jones, Cancer Research UK's chief scientist, has welcomed the new facility, saying: "This unique resource provides an example to the world by bringing together scientists, doctors and patients to make targeted treatments available sooner for cancer patients in Northern Ireland."

The Northern Ireland Molecular Pathology Lab (NI-MPL) and Northern Ireland Biobank (NIB) can improve the diagnosis of cancer thanks to the analysis of tumour samples at a molecular level.

It is being hailed as the chance to usher in an exciting era of personalised treatments in Northern Ireland by providing new insight into the unique characteristics of each patient's condition.

Professor Manuel Salto-Tellez, Professor of Molecular Pathology at Queen's and lead researcher within NI-MPL, said testing at a molecular level will identify changes taking place within each cancer's unique genetic make-up.

Professor Joe O'Sullivan, Professor of Radiation Oncology said that his new amount of detail presented to doctors "will improve outcomes for patients" by prompting more individualised therapies.

And the new integrated hub carries a twin benefit, as not only will it enable more individually tailored treatments but it can also help to drive new advances in cancer research.

The creation of the new NIB is key to this, as it enables researchers to more efficiently access human tissue and blood samples within a robust framework.

They will then be able to cascade that knowledge to the benefit of fellow researchers around the world.

High-quality clinical material and pathological information is vital for the production of meaningful research, explained NIB Scientific Director Jackie James: "The NIB provides all of this within a timely and strict ethical framework."

Professor Nic Jones highlighted Cancer Research UK's pivotal role in setting up the NIB.

He said that Cancer Research UK has provided support to the team of scientists "who have expertise in using this essential tissue resource to understand how to classify patients into groups so that they can receive the most effective treatment targeted to the faults in their DNA".

The development also reduces the possibility of patients receiving unnecessary treatment with difficult side effects, he continued.

"We believe that nurturing world-class research in Northern Ireland will accelerate progress in research leading to increased survival from the disease," added Professor Jones.

Copyright Press Association 2013

Read more...

Page 3 of 82