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.

Caregivers

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.

Click here for online access. 

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.

Click here for online access.

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.

Click here to access online.

Topics: Fatigue, neuro-rehabilitation.

Cochrane reviews

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.

Click here for online access. 

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.

Click here for online access.

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.

Click here for online access.

Topics: brain tumour, patients, caregivers, support interventions, Cochrane review.

COVID 19

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.

Click here for online access.

Topics: COVID, decision making.

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.

Click here for online access. 

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.

Click here for online access. 

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.

Click here for online access. 

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.

Click here for online access.

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.

Click here for online access.

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.

Click here for online access.

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.

Click here for online access.

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.

Click here for online access.

Topics: patient advocacy, biobanks.

Imaging

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.

Click here for online access. 

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.

Click here for online access. 

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.

Click here for online access. 

Topics: imaging, technology, neurosurgery, glioma, Cochrane Review.

Patient pathway

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.

Click here for online access.

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. 

Click here for online access.

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, TorrensBurton  A, Bernstein  M, Nelson  A, Fielding  H.

Click here for online access.

Topics: Cochrane, palliative care, caregivers.

Quality of life

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.

Click here for online access.

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.

Click here for online access.

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.

Click here for online access.

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. 

Click here for online access.

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.

Click here for online access.

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)

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.

 

Surviving a Brain Tumour Diagnosis and Living Life Well: The Importance of Patient-Centred Care (2019)

Bulbeck, Helen & Oliver, Kathy. 

Click here for online access.

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.

Click here for online access.

Topics: Fatigue, neuro-rehabilitation.

Tissue donation

BRAIN UK (UK BRain Archive Information Network), What Next? (2016)

Mitchell, C. et al

Click here for online access.

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.

Click here for online access.

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.

Click here for online access.

Topics: patient advocacy, biobanks.

 

BRain Archive Information Network (BRAIN UK, 2014)

Mitchell, C. et al.

Click here for online access.

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.

Click here for online access.

Topics: biobanks, Network.

Treatment

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.

Click here for online access.

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.

Click here for online access.

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.

Click here for online access.

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.

Click here for online access.

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.

Click here for online access.

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.

Click here for online access. 

Topics: imaging, technology, neurosurgery, glioma, Cochrane Review.

 

Clinical development of new drug radiotherapy combinations (2016)

Sharma, R. et al.

Click here for online access.

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

Click here for online access.

Topics: meningioma, clinical trial, observation, radiotherapy.

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.

Click here for online access. 

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.

Click here for online access. 

Topics: Palliative care, guidelines.

Genomic Sequencing

Genomic landscape of diffuse glioma revealed by whole genome sequencing. (2023)

Kinnersley B, Jung J, Cornish A, et al.

Click here for online access.

Topics: Analysis of genomic landscape, glioma, clinical outcome.

Diagnosis

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.

Click here for online access.

Topics: Brain  tumours, systematic review, diagnosis.

 

Policy

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.

Click here for online access.

Topics: Brain tumour research, landscape, challenges.

 

The UK top ten clinical research priority questions in neuro-oncology. (2016)

Bulbeck, H. et al.

Click here for online access.

Topics: James Lind Alliance, priority setting partnership, neuro-oncology.

Trial Design

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.

Click here for online access.

Topics: Public and patient involvement, clinical trials.

Stay up-to-date with the latest research news

We are passionate about making clinical research accessible, that’s why every week we produce our ‘Weekly Brew’- the brainstrust research newsletter. Every week we compile a expertly curated, jargon-free, accessibly written run down of all the most recent relevant research.

Receive it straight into your inbox, fill out our keeping in touch form and make sure to opt-in for research.

‘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.

Introduction

The Brain Tumour Data Dashboard lets you explore up -to-date, population level data about the brain tumours diagnosed in England between 2013 and 2015. Using the drop down menus on the left you can select different groups of patients to view in the charts below. In these charts the number of patients for every 100 diagnoses is displayed as images of people. Patients have been grouped by date of diagnosis, type of tumour, age, gender, and region in England.

For each group of patients you can explore the different routes to diagnosis, the proportion of those who received chemotherapy or radiotherapy, as well as the survival of the patients within each group. For more information about what these metrics mean please see the glossary.

How to use

  1. Select the year of diagnosis using the drop down menu.
  2. Select your patient group of interest from the four drop down menus in the following order:
    1. Tumour group
    2. Age at diagnosis
    3. Region of England
    4. Gender of patient
  3. To view a second chart to compare different groups of patients, click the ‘compare’ button.The second chart will appear below the first chart.

*Note that the tool is best used on a laptop or tablet rather than a mobile phone*

Unavailable data

Some of the data in these charts is not available.There are two main reasons for this:

  1. How the data has been grouped

If you cannot select a patient group from the drop down menus, the data is unavailable because of how the data has been organised.

Public Health England has grouped the data like a branching tree. The bottom of the tree contains all the patients with brain tumours, and then each branch divides the data by a certain characteristics, like age, or location of tumour. But the data is divided in an order, starting with location of the tumour (endocrine or brain), then by age, region, and gender. Age is at the start because it makes a bigger difference to survival rates and treatment rates than gender or region. Sometimes, after the data has been split by type of tumour and age, there is not enough data to be split again. This is because to protect patient confidentiality groups cannot contain less than 100 patients. Because some groups cannot be split further, you cannot create ‘totals’ for everyone by region or gender. For example, you cannot see results for all ages by region, or all brain tumours by gender. If these totals were calculated and released, it might be possible to identify patients, which is why Public Health England cannot release this data.

  1. Statistical reasons and data availability

If you can select a patient group from the chart menus, but the chart does not display, the data is unavailable for one of several reasons:

  1. Data is not yet available for the selected year from Public Health England.
  2. Data is not available because the data quality is too poor to release this statistic.
  3. Data is not available as the statistic is not appropriate for this group.
  4. Data is not available because the standard error of the estimate was greater than 20% and so the estimate has been supressed.

Up to date brain tumour data

Brain tumour data may influence the decisions you make about your care. Data also helps you understand the bigger picture, or landscape, in which you find yourself.

Brain tumour data and statistics influence the focus, and work of organisations like brainstrust. The information helps us to understand the scale and impact of the problems we are setting out to solve.

This tool helps you understand the landscape in which you find yourself having been diagnosed with a brain tumour. This landscape can be particularly tricky to navigate as there are many different types of brain tumour, all of which have a different impact.

The information you see represents the most up-to-date, official, population level brain tumour data available for England. Over time we will be adding to the brain tumour data available and publishing reports, with recommendations, as a result of what we learn from this data.

The data behind this content has come from Public Health England’s National Cancer Registration and Analysis Service (NCRAS) and is a direct result of the ‘Get Data Out’ project.

This project provides anonymised population level brain tumour data for public use in the form of standard output tables, accessible here: http://cancerdata.nhs.uk/standardoutput

Incidence

The number or rate (per head of population) of new cases of a disease diagnosed in a given population during a specified time period (usually a calendar year). The crude rate is the total number of cases divided by the mid-year population, usually expressed per 100,000 population.

Malignant

Malignant tumours which grow by invasion into surrounding tissues and have the ability to metastasise to distant sites

Mortality

The number or rate (per head of population) of deaths in a given population during a specified time period (usually a calendar year). The crude rate is the total number of deaths divided by the mid-year population, usually expressed per 100,000 population.

Non-malignant

Not cancerousNon-malignant tumours may grow larger but do not spread to other parts of the body.

Survival

The length of time from the date of diagnosis for a disease, such as cancer, that patients diagnosed with the disease are still alive. In a clinical trial, measuring the survival is one way to see how well a new treatment works. Also called ‘overall survival’ or ‘OS’.

Routes to Diagnosis

Under the ‘Routes to Diagnosis’ tab in the Brain Tumour Data Dashboard, you can explore the ways patients have been diagnosed with brain tumours. There are many ways, or routes, for cancers to be diagnosed in the NHS. A ‘route to diagnosis’ is the series of events between a patient and the healthcare system that leads to a diagnosis of cancer. The routes include:

  1. Two Week Wait

Patients are urgently referred by their GP for suspected cancer via the Two Week Wait system and are seen by a specialist within 2 weeks where they are diagnosed.

  1. GP referral

Diagnosis via a GP referral includes routine and urgent referrals where the patient was not referred under the Two Week Wait system.

  1. Emergency Presentation

Cancers can be diagnosed via emergency situations such as via A&E, emergency GP referral, emergency transfer or emergency admission.

  1. Outpatient

Outpatient cancer diagnoses include diagnoses via an elective route which started with an outpatient appointment that is either a self-referral or consultant to consultant referral. (It does not include those under the Two Week Wait referral system).

  1. Inpatient elective

Diagnosis via an inpatient elective route is where diagnosis occurs after the patient has been admitted into secondary care from a waiting list, or where the admission is booked or planned.

  1. Death Certificate Only

Diagnoses made by Death Certificate Only are made where there is no more information about the cancer diagnosis other than the cancer related death notifications. The date of diagnosis is the same as that of the date of death.

  1. Unknown

For some patients with a cancer diagnosis, there is no relevant data available to understand the route to diagnosis.

 

More information

If any of the statistical terms in this section of the brainstrust website are hard to understand, we recommend looking them up here:

Cancer Research UK’s Cancer Statistics Explained

http://www.cancerresearchuk.org/health-professional/cancer-statistics/cancer-stats-explained/statistics-terminology-explained#heading-Seven

If you are looking for help understanding terms relating specifically to brain tumours, and treatment, then the brainstrust glossary is available here:

https://www.brainstrust.org.uk/advice-glossary.php