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.
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.
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)
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.
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.
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.
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 Neurol (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.
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.
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.
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.
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‘None of us is as smart as all of us.’
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.
