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.

New webpage celebrates our brain tumour community achievements of 2015!

By IBTA News
Photo from Meagan's Walk 2015. Click to see more walks and events that took place in 2015

Photo from Meagan's Walk 2015. Click image to see more walks and events that took place in 2015

[28 February 2016] We have today published a new page on the IBTA website that celebrates the achievements of the international community of brain tumour organisations and individuals who have organised walks and events to raise awareness about brain tumours as part of the 2015 Walk Around the World for Brain Tumours and International Brain Tumour Awareness Week. There are photographs and short reports from a selection of different events and walks that took place last year. Please do take a look – it is incredible to see what has been done for raising awareness of brain tumours around the world! Click here.

If you would like to let us know about an event or walk to be considered for inclusion on the website, please do send an email to  And don’t forget to tell us about what you have planned for 2016 – submit details about walks and events online here.

You can find out more about the IBTA’s 2016 Walk Around the World for Brain Tumours initiative and the International Brain Tumour Awareness Week (22 to 29 October, 2016) here.

Ground-breaking new educational ‘Toolbox’ on Medicines Research & Development launched by EUPATI

By IBTA News
[2 February 2016] A new online Toolbox on Medicines Research & Development has been launched by The European Patients’ Academy on Therapeutic Innovation (EUPATI), offering information to the public on more than 100 topics in seven languages. The toolbox is also a free resource designed for patient advocates – such as those in the brain tumour community – to help them have more meaningful patient involvement.

EUPATI toolbox

EUPATI Toolbox on Medicines Research & Development

The online resource contains more than 3,000 expert materials on the ‘A-Z’ of medicines research and development (R&D), which includes a wealth of fact sheets, graphics, slideshows, videos, recorded webinars, print-ready materials, and a full glossary. It is available to all European patient groups, patient advocates, and anyone who is interested in learning more about the medicines R&D process. The project is the result of a long-term collaboration of expert stakeholders (including patients, researchers and academics). It also follows EUPATI’s hugely successful Patient Expert Training Course, which was launched in October 2014.

The vision behind the toolbox is that the public will use it to gain the knowledge required to make a meaningful contribution to medicines development. All resources are available under a Creative Commons License and can be explored, shared and adapted by users.  Content includes information-rich modules and best-in-class educational materials on discovery research, clinical development, regulatory affairs, medicinal safety, pharmacovigilance and the principles of health technology assessment.

You can access the ‘EUPATI Toolbox on Medicines R&D’ at

Discover more about the ‘EUPATI Toolbox on Medicines R&D’ by watching this video.

For updates, you can follow EUPATI on twitter or via their Facebook page.

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