brainstrust’s research and evidence
We know that good support comes from strong evidence. We’re really proud to be involved in a growing body of clinical evidence that demonstrates the need for impactful emotional and pragmatic brain tumour support. Here is our library of published research that has involved brainstrust.
The range of topics the following research covers include:
Caregivers, Cochrane Reviews, COVID-19, Decision Making, Imaging, Patient Pathway, Quality of Life, Tissue Donation, Treatment and Palliative Care.
Early palliative interventions for improving outcomes in people with a primary malignant brain tumour and their carers (2022)
Byrne A, Sivell S, Moraes FY, Bulbeck H, Torrens‐Burton A, Bernstein M, Nelson A, Fielding H.
Topics: communication, glioma, coaching, shared engagement.
Interventions to help support caregivers of people with a brain or spinal cord tumour (2019)
Florien W Boele, Helen Bulbeck, Catherine Browne, Alasdair G Rooney, Paula Sherwood.
Topics: brain tumour, patients, caregivers, support interventions, Cochrane review.
Neurocognitive Deficits and Neurocognitive Rehabilitation in Adult Brain Tumors in Current Treatment Options in Neurol (2016)
Day, J., Gillespie, D.C., Rooney, A.G., Boele, F., Bulbeck, H., Grant, R., Zenuis, K.
Topics: Fatigue, neuro-rehabilitation.
Early palliative interventions for improving outcomes in people with a primary malignant brain tumour and their carers (2022)
Byrne A, Sivell S, Moraes FY, Bulbeck H, Torrens‐Burton A, Bernstein M, Nelson A, Fielding H.
Topics: communication, glioma, coaching, shared engagement.
Treatment of newly diagnosed glioblastoma in the elderly: a network meta‐analysis (2020)
Hanna C, Lawrie TA, Rogozińska E, Kernohan A, Jefferies S, Bulbeck H, Ali UM, Robinson T, Grant R.
Topics: glioblastoma, elderly, treatments, meta-analysis, Cochrane review.
Interventions to help support caregivers of people with a brain or spinal cord tumour (2019)
Florien W Boele, Helen Bulbeck, Catherine Browne, Alasdair G Rooney, Paula Sherwood.
Topics: brain tumour, patients, caregivers, support interventions, Cochrane review.
Impact of COVID-19 pandemic on surgical neuro-oncology multi-disciplinary team decision making: a national survey (2020)
Price SJ, Joannides A, Plaha P On behalf of the COVID-CNSMDT study group, et al.
Topics: COVID, decision making.
Communication in the context of glioblastoma treatment: A qualitative study of what matters most to patients, caregivers and health care professionals. (2023)
Boele FW, Butler S, Nicklin E, et al.
Topics: Glioblastoma, communication, quality of life, qualitative study.
Measuring what matters to the brain cancer community in ‘Effects of Cancer Treatment on the Nervous System, Volume 1’ (2022)
Bulbeck, H.
Topics: communication, glioma, coaching, shared engagement.
Measuring what matters to the brain cancer community in ‘Effects of Cancer Treatment on the Nervous System, Volume 1’ (2022)
Bulbeck, H.
Topics: communication, glioma, coaching, shared engagement.
Determining medical decision-making capacity in brain tumor patients: why and how? (2020)
Andrea Pace, Johan A F Koekkoek, Martin J van den Bent, Helen J Bulbeck, Jane Fleming.
Topics: Decision making, treatment.
Impact of COVID-19 pandemic on surgical neuro-oncology multi-disciplinary team decision making: a national survey (2020)
Price SJ, Joannides A, Plaha P On behalf of the COVID-CNSMDT study group, et al.
Topics: COVID, decision making.
Patient and caregiver advocacy (2019)
Grisold, W. Bulbeck, H.
Click here for online access.
To access this chapter please contact Helen Bulbeck.
Topics: brain tumour, patient, caregiver, advocacy, roles, patient journey, community, patient voice.
Communication skills: the patient as co-pilot in Management of adult glioma in nursing practice. (2019)
Oberg, I. et al.
To access this specific chapter please contact Helen Bulbeck.
Topics: communication, glioma, coaching, shared engagement.
UK BRain Archive Information Network (BRAIN UK) A lack of consent to donate tissue hampers progress (2015)
Mitchell, C. et al.
Topics: tissue banking, donation, research.
The Importance of Quality Patient Advocacy to Biobanks: A Lay Perspective from Independent Cancer Patients Voice (ICPV). Advances in Experimental Medicine and Biology (2015)
Wilcox, M. et al.
Topics: patient advocacy, biobanks.
A position statement on the utility of interval imaging in standard of care brain tumour management: defining the evidence gap and opportunities for future research (2021)
Thomas C Booth, Gerard Thompson, Helen Bulbeck, Florien Boele, Craig Buckley, Jorge Cardoso, Liane Dos Santos Canas, David Jenkinson, Keyoumars Ashkan, Jack Kreindler, Nicky Huskens, Aysha Luis, Catherine Mcbain, Samantha J Mills, Marc Modat, Nick Morley, Caroline Murphy, Sebastien Ourselin, Mark Pennington, James Powell, David Summers, Adam Waldman, Colin Watts, Matthew Williams, Robin Grant, Michael Jenkinson.
Topics: imaging, technology, neurosurgery, glioma.
Glioblastoma post-operative imaging in neuro-oncology: current UK practice (2020)
Booth, T.C., Luis, A., Brazil, L. et al.
Topics: Imaging practices, imaging schedule, future directions.
Intraoperative imaging technology to maximise extent of resection for glioma (2017)
Fountain DM, Bryant A, Barone DG, Waqar M, Hart MG, Bulbeck H, Kernohan A, Watts C, Jenkinson MD.
Topics: imaging, technology, neurosurgery, glioma, Cochrane Review.
Treatment of newly diagnosed glioblastoma in the elderly: a network meta‐analysis (2020)
Hanna C, Lawrie TA, Rogozińska E, Kernohan A, Jefferies S, Bulbeck H, Ali UM, Robinson T, Grant R.
Topics: glioblastoma, elderly, treatments, meta-analysis, Cochrane review.
Surviving a Brain Tumour Diagnosis and Living Life Well: The Importance of Patient-Centred Care (2019)
Bulbeck, Helen & Oliver, Kathy.
Topics: brain tumour, patient, caregiver, advocacy, roles, patient journey, community, patient voice.
Defining unmet clinical need across the pathway of brain tumor care: a patient and carer perspective. (2019)
Sage, William et al.
Contact Helen Bulbeck for access.
Topics: Caregiver, decision making.
Early palliative interventions for improving outcomes in people with a primary malignant brain tumour and their carers (2019)
Byrne A, Sivell S, Moraes FY, Bulbeck H, Torrens‐Burton A, Bernstein M, Nelson A, Fielding H.
Topics: Cochrane, palliative care, caregivers.
Communication in the context of glioblastoma treatment: A qualitative study of what matters most to patients, caregivers and health care professionals. (2023)
Boele FW, Butler S, Nicklin E, et al.
Topics: Glioblastoma, communication, quality of life, qualitative study.
Interventions for the management of fatigue in adults with a primary brain tumour (2022)
Day, J. et al.
Topics: management of fatigue, primary brain tumours.
Systematic review on the use of patient-reported outcome measures in brain tumor studies: part of the Response Assessment in Neuro-Oncology Patient-Reported Outcome (RANO-PRO) initiative. (2021)
Dirven L, Vos ME, Walbert T, Armstrong TS, Arons D, van den Bent MJ, Blakeley J, Brown PD, Bulbeck H, Chang SM, Coens C, Gilbert MR, Grant R, Jalali R, Leach D, Leeper H, Mendoza T, Nayak L, Oliver K, Reijneveld JC, Le Rhun E, Rubinstein L, Weller M, Wen PY, Taphoorn MJB.
Topics: Patient reported outcome measures, brain tumour research.
Identification of characteristics that determine behavioural and personality changes in adult glioma patients. (2021)
Zwinkels H, Dirven L, Bulbeck HJ, Grant R, Habets EJJ, Koekkoek JAF, Oberg I, Oliver K, Pace A, Rooney AG, Vos MJ, Taphoorn MJB.
Topics: Behaviour changes, personality, glioma.
Measuring what matters to the brain cancer community in Effects of Cancer Treatment on the Nervous System, Volume 1. (2020)
Bulbeck, H. Grisold, W et al.
To access this chapter please contact Helen Bulbeck.
Topics: Quality of life, patient centred care, challenges living with a brain tumour.
Communication skills: the patient as co-pilot in Management of adult glioma in nursing practice (2019)
Bulbeck, H.
Topics: communication, glioma, coaching, shared engagement.
Advocacy in Neurology (2019)
Grisold, Wolfgang, and Helen Bulbeck (ed.), ‘Patient and caregiver advocacy’, in Wolfgang Grisold, Walter Struhal, and Thomas Grisold (eds)
To access this chapter please contact Helen Bulbeck.
Topics: brain tumour, patient, caregiver, advocacy, roles, patient journey, community, patient voice.
Surviving a Brain Tumour Diagnosis and Living Life Well: The Importance of Patient-Centred Care (2019)
Bulbeck, Helen & Oliver, Kathy.
Topics: brain tumour, patient, caregiver, advocacy, roles, patient journey, community, patient voice.
Neurocognitive Deficits and Neurocognitive Rehabilitation in Adult Brain Tumors in Current Treatment Options in Neurology. (2016)
Day, J., Gillespie, D.C., Rooney, A.G., Boele, F., Bulbeck, H., Grant, R., Zenuis, K.
Topics: Fatigue, neuro-rehabilitation.
BRAIN UK (UK BRain Archive Information Network), What Next? (2016)
Mitchell, C. et al
Topics: neuropathology, archives, data collection, BRAIN UK.
UK BRain Archive Information Network (BRAIN UK) A lack of consent to donate tissue hampers progress (2015)
Mitchell, C. et al.
Topics: tissue banking, donation.
The Importance of Quality Patient Advocacy to Biobanks: A Lay Perspective from Independent Cancer Patients Voice (ICPV). Advances in Experimental Medicine and Biology (2015)
Wilcox, M. et al.
Topics: patient advocacy, biobanks.
BRain Archive Information Network (BRAIN UK, 2014)
Mitchell, C. et al.
Topics: neuropathology, archives, data collection, BRAIN UK.
A data standard for sourcing fit-for-purpose biological samples in an integrated virtual network of biobanks. (2014)
Quinlan PR, Mistry G, Bullbeck H, Carter A.
Topics: biobanks, Network.
Brain Re-Irradiation Or Chemotherapy: a phase II randomised trial of re-irradiation and chemotherapy in patients with recurrent glioblastoma (BRIOChe): Protocol for a multi-centre open label randomised trial. (2024)
Eleanor M Hudson, Samantha Noutch, Joanne Webster, Sarah R Brown, Florien W Boele, Omar Al-Salihi, Helen Baines, Helen Bulbeck, Stuart Currie, Sharon Fernandez, Jane Hughes, John Lilley, Alexandra Smith, Catherine Parbutt, Finbar Slevin, Susan Short, David Sebag-Montefiore, Louise Murray.
Topics: Re-irradiation, recurrent glioblastoma.
Treatment of newly diagnosed glioblastoma in the elderly: a network meta‐analysis (2020)
Hanna C, Lawrie TA, Rogozińska E, Kernohan A, Jefferies S, Bulbeck H, Ali UM, Robinson T, Grant R.
Topics: glioblastoma, elderly, treatments, meta-analysis, Cochrane review.
Letter to the Editor. Phase III randomized controlled trials are essential to properly evaluate the role of radiotherapy in WHO grade II meningioma. (2018)
Jenkinson MD, Weber DC, Haylock BJ, Sherratt FC, Young B, Weller M, Bulbeck H, Culeddu G, Hughes DA, Brain A, Das K, Preusser M, Francis P, Gamble C.
Topics: Radiotherapy, meningioma.
Proton Beam Therapy – the Challenges of Delivering High-quality Evidence of Clinical Benefit. (2018)
Amos, R, Bulbeck, H, Burnet, NG et al.
Topics: proton beam therapy, external beam therapy, clinical trials.
Evaluating excellence in radiotherapy research: the UK CTRad ‘Centres of Excellence’ initiative (2018)
Chalmers, Anthony & Adams, Richard & Bulbeck, Helen & Burnet, Neil & Evans, P. & Lambin, P. & Plummer, R. & Stratford, I. & Heide, U. & Sebag-Montefiore, D.
To access this chapter please contact Helen Bulbeck.
Topics: radiotherapy, research.
Postprogression survival in patients with glioblastoma treated with concurrent chemoradiotherapy: a routine care cohort study. (2017)
Majewska P, Ioannidis S, Raza MH, Tanna N, Bulbeck H, Williams M.
Topics: Progression, glioblastoma, chemoradiotherapy.
Intraoperative imaging technology to maximise extent of resection for glioma (2017)
Michael D Jenkinson, Damiano Giuseppe Barone, Andrew Bryant, Luke Vale, Helen Bulbeck, Theresa A Lawrie, Michael G Hart, Colin Watts.
Topics: imaging, technology, neurosurgery, glioma, Cochrane Review.
Clinical development of new drug radiotherapy combinations (2016)
Sharma, R. et al.
Topics: optimal targeted therapy, radiotherapy combinations, clinical trials.
Radiation versus Observation following surgical resection of Atypical Meningioma: Study protocol for a randomised controlled trial (2015)
Jenkinson, M. et al
Topics: meningioma, clinical trial, observation, radiotherapy.
Early palliative interventions for improving outcomes in people with a primary malignant brain tumour and their carers (2022)
Byrne A, Sivell S, Moraes FY, Bulbeck H, Torrens‐Burton A, Bernstein M, Nelson A, Fielding H.
Topics: communication, glioma, coaching, shared engagement.
European Association for Neuro-Oncology (EANO) guidelines for palliative care in adults with glioma. (2017)
Pace A, Dirven L, Koekkoek JAF, Golla H, Fleming J, Rudà R, Marosi C, Le Rhun E, Grant R, Oliver K, Oberg I, Bulbeck HJ, Rooney AG, Henriksson R, Pasman HRW, Oberndorfer S, Weller M, Taphoorn MJB.
Topics: Palliative care, guidelines.
Genomic landscape of diffuse glioma revealed by whole genome sequencing. (2023)
Kinnersley B, Jung J, Cornish A, et al.
Topics: Analysis of genomic landscape, glioma, clinical outcome.
Interventions to reduce the time to diagnosis of brain tumours. (2020)
Grant R, Dowswell T, Tomlinson E, Brennan PM, Walter FM, Ben-Shlomo Y, Hunt DWilliam, Bulbeck H, Kernohan A, Robinson T, Lawrie TA.
Topics: Brain tumours, systematic review, diagnosis.
Brain tumor research in the United Kingdom: current perspective and future challenges. (2017)
Kurian KM, Jenkinson MD, Brennan PM, Grant R, Jefferies S, Rooney AG, Bulbeck H, Erridge SC, Mills S, McBain C, McCabe MG, Price SJ, Marino S, Moyes E, Qian W, Waldman A, Vaqas B, Keatley D, Burchill P, Watts C.
Topics: Brain tumour research, landscape, challenges.
The UK top ten clinical research priority questions in neuro-oncology. (2016)
Bulbeck, H. et al.
Topics: James Lind Alliance, priority setting partnership, neuro-oncology.
Priorities for methodological research on patient and public involvement in clinical trials: A modified Delphi process. (2017)
Kearney A, Williamson P, Young B, Bagley H, Gamble C, Denegri S, Muir D, Simon NA, Thomas S, Elliot JT, Bulbeck H, Crocker JC, Planner C, Vale C, Clarke M, Sprosen T, Woolfall K.
Topics: Public and patient involvement, clinical trials.
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Meaningful collaboration and co-creation is a key component of our approach as we work to secure the best outcomes for anyone who is living with a brain tumour. Our work supporting the development of impactful, person-centred clinical research is supported and enhanced by a rich network of partnerships. Find out more about how collaboration is helping us secure the best outcomes for people living with a brain tumour.
