All Posts By

Stuart Farrimond

World Health Organisation updates central nervous system tumour classification

By IBTA News

Categorising brain tumours[17 May 2016] The World Health Organisation (WHO) has published an updated classification of central nervous system tumours, setting a new standard for brain tumour research and communication between different centers around the world. The revised fifth edition is a major update to the existing 2007 classification and brings the naming and grouping of brain tumours into line with current scientific understanding and technology. For the first time, the new WHO classification combines the genetic information of brain tumours with their histology (the way the tumour looks under a microscope), thus formulating a more accurate concept for how brain tumour diagnoses should be named and structured.

This new classification is the culmination of work by a collaboration of 117 experts from 20 different countries and will allow for more accurate diagnosis, treatment planning and prognosis. With the new classification, brain tumour patients in clinical trials may be stratified into groups that reflect the molecular profile of their tumour, allowing effective targeted treatments to be found more easily. The new classification will also aid researchers by helping them to make more precise analysis of data in the lab, and to accurately compare their results with other institutions.

Within the updated classification, glioblastomas are now organised according to their IDH mutation status, while some entities have been deleted that no longer have diagnostic and/or biological relevance. Newly identified tumour types have been incorporated into the classification and use of the diagnosis “oligoastrocytoma” is now discouraged in favour of astrocytoma or oligodendroglioma. All changes can be found online in the 2016 World Health Organization Classification of Tumors of the Central Nervous System summary.

The IBTA is excited by the publication of the new classification and recognises that it represents a significant step forward in the ongoing journey to improve brain tumour patient treatment and care. The IBTA also extends its gratitude to the many experts whose hard work has brought about the updated classification, which will serve to benefit brain tumour patients all around the world.

IBTA e-News April 2016 out now

By IBTA News
[30 April 2016] The IBTA's monthly e-News has now been released and has been emailed to all subscribers.

Some of the highlights from the April issue include:

  • Several leading figures in brain tumour research and care have been appointed to the US Government's newly established 'Moonshot Initiative' to advance cancer research
  • In recently published guidance, the European Medicine's Agency (EMA) has acknowledged the need to bring patients' perspectives of their treatments and illness into future cancer research
  • Following a successful e-Petition calling for a UK Parliamentary debate on brain tumour research funding, Health Minister George Freeman MP has announced a package of measures to improve brain tumour research, diagnosis and treatment.a package of measures has been announced
  • A study has found that glioma patients fare better when given a combination of radiotherapy and chemotherapy, as opposed to radiotherapy alone
  • Both regular aspirin use and childhood chickenpox infection have been linked to a lower risk for glioma
  • The blood pressure medicine prazosin has been found to reduce glioblastoma growth
  • DelMar Pharmaceutical’s experimental VAL-083 treatment for glioblastoma is due to progress to phase III clinical trials

You can read the IBTA e-News April edition online here.

Our monthly e-News highlights items of interest to our international brain tumour community and is emailed to nearly 7,000 recipients. It gives a round-up of the latest research and treatment developments, news about brain tumour patient organisations around the world, and key forthcoming neuro-oncology scientific and patient conferences. You can sign up to receive the e-News by registering here.

To see an archive of existing e-News issues, click here.


May 2016 marks the start of national Brain Tumor Awareness Week in the USA and Brain Cancer Action Week in Australia

By IBTA News
[29 April 2016] May is national Brain Tumor Awareness Month in the United States - a time when the brain tumour community comes together to raise public awareness of brain tumours, fundraise for research and care, and run educational activities and events. There are countless opportunities for patients, advocates and stakeholders to celebrate achievements and get involved with activities and online awareness building. The social media hashtag for the month is #BTAM.

Race for Hope DC was just one event that took place in May 2015. (Click image to find out about the 2016 walk.)

Race for Hope DC was just one event that took place in May of last year. (Click image to find out about this year's event.)

Of the many events that will be taking place, the National Brain Tumor Society will be holding their annual 'Head to the Hill' advocacy event at Capitol Hill, Washington DC, on May 2-3. It will be attended by hundreds of brain tumour advocates from across the country and the two-day event will include advocacy training and congressional visits (read more here). The American Brain Tumor Association (ABTA) is also holding a variety of walks and fundraising events across the country throughout the month (an online calendar of all ABTA fundraising events is accessible here).

The start of May is doubly important as it marks the beginning of Brain Cancer Action Week in Australia. Running from Sunday 1st to Saturday 7th May inclusive, a wide variety of events and activities will be taking place across the country and the organisations supporting the week and/or running activities include Cancer Council Australia, Sydney Neuro-Oncology Group, Cure Brain Cancer Foundation, Yellow Diamond Foundation, and Brain Tumour Alliance Australia.

Search online for events or activities in your area – but don’t forget that our IBTA Alliance page and advocacy group information page lists and provides links to more than 60 brain tumour organisations in the USA and 12 in Australia.

Our sincerest hope is that all of the US and Australia-based brain tumour community have a fruitful and encouraging time during their respective brain tumour awareness periods. We would love to hear about your experiences and you can get in touch with us via our contact page. All sponsored or unsponsored walks to raise awareness about brain tumours can symbolically “donate” the mileage covered to the IBTA World Walk target of circling the Earth at the Equator - click here to find out more. You can also find out more about how the IBTA supports the international brain tumour community here.

Finally, if you want to be inspired then take a look at our page dedicated to awareness-raising events that took place across the world in 2015 here.

IBTA acknowledged for assisting Quality of Life research

By IBTA News
[8 April 2016] The IBTA has been acknowledged for its assistance in research published in the journal Quality of Life Research on 2 April 2016. The newly published report offers insights into how quality of life (QoL) assessments in cancer patients may aid research and improve the relationship between patients and healthcare professionals. Sonja Marjanovic and Sarah Parks, two of the authors of the paper and representatives of the not-for-profit research institute RAND Europe, attended the IBTA Second World Summit of Brain Tumour Patient Advocates, held on 25-27 October 2016, in Sitges, Spain to consult with Summit participants. Representatives of brain tumour patient advocacy organisations at the Summit - who came from 27 countries from across the globe - also assisted in the research effort by completing surveys.

IBTA Summit participants were asked to complete a survey for RAND Europe on quality of life measures.

IBTA Summit participants were asked to complete a survey for RAND Europe on quality of life measures.

The research paper places particular emphasis on brain tumours and notes that the use of life-extending treatments needs to be balanced with the potential negative effects of these treatments. In addition to the IBTA Summit consultation, the researchers conducted a systematic analysis of existing QoL research in cancer patients and examined the different surveys, tests and measures currently being used to assess cancer patient QoL. They also conducted interviews with professionals and brain tumour advocacy groups.

The report, entitled “The use and impact of quality of life assessment tools in clinical care settings for cancer patients, with a particular emphasis on brain cancer: insights from a systematic review and stakeholder consultations”, found that there were no relevant QoL intervention studies for brain cancer patients in the scientific literature, but 15 relevant studies were found when the search was widened to include other cancers. From these existing studies, the authors' analysis found that there was no consistent evidence for whether or not QoL assessments affect patient care. They did, however, find evidence in favour of QoL tools being useful for improving patient–physician communication. The authors conclude that “there is a need for further research and stakeholder engagement on how HRQoL (Health-Related Quality of Life) tools can achieve impact across different cancer and patient group contexts, in real-world settings.”

The full report can be read online here.

Explore the IBTA Alliance with our new interactive map

By IBTA News

[6 April 2016] A new interactive map has been added to Our Alliance page. The scalable map gives links to the brain tumour patient organisations in the IBTA Alliance and shows the countries (111) in which the annual IBTA magazine, Brain Tumour, is distributed.

The IBTA AllianceThese organisations are part of the IBTA global network, which is a dynamic worldwide community for brain tumour patient organisations and others involved in the field of neuro oncology. We work with Alliance supporters, prospective supporters, researchers, medical professionals, pharmaceutical and device companies, government agencies, regulators, medical societies, key opinion leaders, the media and others involved in the neuro oncology community.  Bringing together experience and expertise from all over the world, we have the overarching aim of enhancing the well-being and quality of life of brain tumour patients and their families.

IBTA's annual publication, Brain Tumour magazine, reaches deep into the international brain tumour community and covers stories from patients, family members, carers, healthcare specialists, researchers, scientists and professional societies. Between 13,000 and 14,000 thousand copies of Brain Tumour magazine are printed and approximately 10,000 are mailed for free directly to contacts on the IBTA’s unique database.

To find out more and to explore the IBTA Alliance via our new map, please click here.

let us know you agree to cookies

The IBTA website uses cookies to give you the best online experience in accordance with our cookies policy. If you are happy, please confirm by clicking the 'Accept' button below.