The IBTA works closely in an advisory role with researchers, policy makers, steering groups, industry and government bodies, advocating on behalf of the brain tumour community to work towards better care and provision for all those affected by this disease. As part of this role, the IBTA has contributed to and co-authored a wide range of research papers and guidance documents.
A selection of these articles is listed below (Some articles are not available to read in full without payment or journal subscription):
2019
- Towards an Evidence-Informed Value Scale for Surgical and Radiation Oncology: a Multi-Stakeholder Perspective. The Lancet Oncology, vol. 20, no. 2, 2019, doi:10.1016/s1470-2045(18)30917-3. https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(18)30917-3/fulltext
2018
- Guiding Principles on Reasonable Agreements between Patient Advocates and Pharmaceutical Companies, Workgroup of European Cancer Patient Advocacy Networks (WECAN), October 2018. https://www.mpeurope.org/legal_agreements/wp-content/uploads/2018/11/Guiding-Principles_final-document.pdf
- Rare Cancers: the Landscape Is Changing. Expert Opinion on Orphan Drugs, vol. 6, no. 9, 2018, pp. 509–511., doi:10.1080/21678707.2018.1504676. https://www.tandfonline.com/doi/full/10.1080/21678707.2018.1504676
- Moving Forward toward Standardizing Analysis of Quality of Life Data in Randomized Cancer Clinical Trials. Clinical Trials, vol. 15, no. 6, 2018, pp. 624–630., doi:10.1177/1740774518795637 https://journals.sagepub.com/doi/abs/10.1177/1740774518795637
- Statistical Analysis of Patient-Reported Outcome Data in Randomised Controlled Trials of Locally Advanced and Metastatic Breast Cancer: a Systematic Review. The Lancet Oncology, vol. 19, no. 9, 2018, doi:10.1016/s1470-2045(18)30418-2. https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(18)30418-2/fulltext
2017
- Towards Sustainable Cancer Care: Reducing Inefficiencies, Improving Outcomes—A Policy Report from the All.Can Initiative. Journal of Cancer Policy, vol. 13, 2017, pp. 47–64., doi:10.1016/j.jcpo.2017.05.004. https://www.sciencedirect.com/science/article/pii/S221353831730019X?via%3Dihub
- European Association for Neuro-Oncology (EANO) guidelines for palliative care in adults with glioma, The Lancet Oncology, Volume 18, No 6, e330-e340, June 2017. http://www.thelancet.com/pdfs/journals/lanonc/PIIS1470-2045(17)30345-5.pdf
- European Reference Networks (ERNs): A New Initiative to Increase Collaborative, Cross- Border Approaches to Treating Brain Tumor Patients , World Federation of Neuro-Oncology Societies Magazine, ISSN 2518-6507, Volume 2 (2017), Issue 2. https://www.eano.eu/fileadmin/content/News_magazine/WFNOSM_2_2017_2.pdf
- Patient Value: Perspectives from the Advocacy Community. Health Expectations, vol. 21, no. 1, 2017, pp. 57–63., doi:10.1111/hex.12628. http://onlinelibrary.wiley.com/doi/10.1111/hex.12628/full
2016
- Analysing data from patient-reported outcome and quality of life endpoints for cancer clinical trials: a start in setting international standards, The Lancet Oncology, Volume 17, No. 11, e510–e514, November 2016. http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(16)30510-1/fulltext?utm_source=TLOweekly05.10.16&utm_medium=email&utm_campaign=TLOweekly
2015
- The UK Top 10 Clinical Research Priorities In Neuro-Oncology. Neuro-Oncology, vol. 17, no. suppl 8, 2015, doi:10.1093/neuonc/nov283.01. https://academic.oup.com/neuro-oncology/article/17/suppl_8/viii16/2472660
2014
- A Catalyst for Change: The European Cancer Patient’s Bill of Rights. The Oncologist, vol. 19, no. 3, 2014, pp. 217–224., doi:10.1634/theoncologist.2013-0452. http://theoncologist.alphamedpress.org/content/early/2014/01/31/theoncologist.2013-0452.full.pdf#page=1&view=FitH
- Rare Cancers Europe (RCE) Methodological Recommendations for Clinical Studies in Rare Cancers: a European Consensus Position Paper. Annals of Oncology, vol. 26, no. 2, 2014, pp. 300–306., doi:10.1093/annonc/mdu459. https://academic.oup.com/annonc/article/26/2/300/2800588
- Demystifying Palliative Care. European Association of NeuroOncology Magazine, vol. 4, no. 3, 2014, pp. 127–128. http://www.kup.at/journals/inhalt/1650.html
- Banned! European Association of NeuroOncology Magazine, 2014, vol. 4, no. 2, pp. 85-86. http://www.kup.at/journals/inhalt/1622.html
- Greater Collaboration Leads to Greater Knowledge and Hope. The First World Summit of Brain Tumour Patient Advocates Takes Place in Lafayette, California Just Prior to SNO/WFNO 2013. European Association of NeuroOncology Magazine, vol. 4, no. 1, 2014, pp. 39-41 http://www.kup.at/journals/inhalt/1601.html
- Exploratory Research into Cancer Patients’ Attitudes to Clinical Trials. ECancer Medical Science, 2014, doi:10.3332/ecancer.2014.432. http://ecancer.org/journal/8/432-exploratory-research-into-cancer-patients-attitudes-to-clinical-trials.php
2013
- Searching for an Anchorage in an ‘Unmoored State’. How can Patients with Brain Metastases be Helped by Brain Tumour Patient Advocacy and Support Organisations. European Association of NeuroOncology Magazine, vol. 3, no. 3, 2013, pp. 145-147 http://www.kup.at/journals/inhalt/1576.html
- When Personalised Medicine Meets HTA: Are we on Target? European Association of NeuroOncology Magazine, vol. 3, no. 2, 2013, pp. 72-73 http://www.kup.at/journals/inhalt/1552.html
- The Role and Support of Caregivers: We Also Ride the Brain Tumour Roller Coaster. European Association of NeuroOncology Magazine, vol. 3, no. 1, 2013, pp. 31-32 http://www.kup.at/journals/inhalt/1507.html
2012
- Patient Advocates and Guidelines Development: Token Involvement or Meaningful Input? European Association of NeuroOncology Magazine, vol. 2, no. 3, 2012, pp. 140-141 http://www.kup.at/journals/inhalt/1484.html
- Count me in… European Association of NeuroOncology Magazine, vol. 2, no. 2, 2012, pp. 98-99 http://www.kup.at/journals/inhalt/1458.html
- What you don’t know won’t hurt you. European Association of NeuroOncology Magazine, vol. 2, no. 1, 2012, pp. 50-51 http://www.kup.at/journals/inhalt/1420.html
2011
- Why do we need brain tumour patient advocates? European Association of NeuroOncology Magazine, vol. 1, no. 1, 2011, p. 47 http://www.kup.at/journals/inhalt/1369.html
2009
- Oliver, Kathy, and Denis Strangman. The First Documented, Modern-Day Brain Tumour Surgery for a Glioma: Published to Commemorate the 125th Anniversary of Rickman John Godlee’s Landmark Operation on November 25, 1884. The International Brain Tumour Alliance (IBTA), 2009. https://elibrary.westminster.gov.uk/client/en_GB/wcc/search/detailnonmodal/ent:$002f$002fSD_ILS$002f0$002fSD_ILS:514688/one?qu=Strangman%2C+Denis.&ic=true&ps=300 (available in hard copy only)
2008
- Oliver, Kathy, and Denis Strangman. The First Walk around the World for Brain Tumours & the International Brain Tumour Awareness Week (21-27 October 2007). International Brain Tumour Alliance, 2008. https://catalogue.nla.gov.au/Record/4391434 (available in hard copy only)
- Combining Equity and Autonomy: The Debate on Access to Medicines. British Journal of Neuroscience Nursing, vol. 4, no. 12, 2008, pp. 570–571., doi:10.12968/bjnn.2008.4.12.31960. https://www.magonlinelibrary.com/doi/abs/10.12968/bjnn.2008.4.12.31960
- Out of the Shadows. The Parliament Magazine, Feb. 2008, pp. 40–41. https://theibta.org/wp-content/uploads/2014/12/TheParliamentMagFeb08.pdf
- Allies in the Fight against Brain Tumours. British Journal of Neuroscience Nursing, vol. 4, no. 2, 2008, pp. 56–58., doi:10.12968/bjnn.2008.4.2.28216. https://www.magonlinelibrary.com/doi/abs/10.12968/bjnn.2008.4.2.28216
2007
- Alliance Calls for More Research into Brain Tumours. British Journal of Neuroscience Nursing, vol. 3, no. 11, 2007, pp. 532–532., doi:10.12968/bjnn.2007.3.11.532. https://www.magonlinelibrary.com/doi/abs/10.12968/bjnn.2007.3.5.23438
- Brain Tumour Treatments: the View of Patients and Caregivers. British Journal of Neuroscience Nursing, vol. 3, no. 5, 2007, pp. 194–196., doi:10.12968/bjnn.2007.3.5.23438. https://www.magonlinelibrary.com/doi/abs/10.12968/bjnn.2007.3.5.23438