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Stuart Farrimond

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.

IBTA e-News February 2016 now out

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

Some of the highlights from the February issue include:

  • Two glioblastoma treatments are selected as ‘Clinical Cancer Advances’ in American Society of Clinical Oncology’s annual report
  • Brain tumours are found to be leading cause of cancer-related death in teenagers and young adults
  • International study identifies unique subtypes of glioma
  • Proton beam therapy: finding the truth behind the recent headlines
  • A clinical trial of Robotic Laser Thermotherapy will focus on quality of life outcomes
  • An international research consortium finds that asthma, eczema, and respiratory allergies are linked to reduced glioma risk
  • 'Stand up to Cancer Canada' announces their brain tumour research ‘dream team’
  • Experts make their predictions for brain tumour research advances in 2016

View the IBTA e-News February 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 subscribe to receive the IBTA e-News each month by registering here.

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