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The Brain Tumour Charity Project
Transcript of The Brain Tumour Charity Project
Clinical Trials Research
Symptom Experience in Patients with Primary Brain Tumors: A Longitudinal Exploratory Study
Joint funding with Cancer Research UK.
Review by Clinical Trials Awards and Advisory Committee.
Trial development with registered trial unit recommended.
Current work includes...
Exploratory clinical trial into Nilotinib combination treatment for young people with glioma
Direct chemotherapy application to Cerebrospinal fluid of children with brain tumors.
Targeted radiotherapy for secondary brain tumors, as whole brain radiotherapy is linked to memory loss.
Proposal assessed individually based on following criteria...
Adequacy of background and preliminary data.
Strength of study design.
If it is expected appeal to patients.
Anticipated trial start date.
Clinical Trial Criteria
Used in Chronic Myeloid Leukemia
Exploring use for "young people with low grade glioma"
Trying to find most effective dose and exploring combination treatments.
Dr Susan Picton University of Birmingham
Clinical Trails in children and young people are rareat but entirely necessary as the treatments still need to be proven to be safe and effective.
The aim of the study was:
“to better understand the symptom experience of newly diagnosed patients with brain tumor over time”
The CASP Qualitative Checklist was used
Clear aim, stated both in abstract and introduction
Explains why relevant to practice and why its important i.e. poor prognosis so important to improve quality of life
Research is exploratory - listening to patients views by conducting interviews
Authors mention little research done in this field
Aim and Method
Study was originally part of bigger cancer study so some aspects are not specific - key limitation
Participants recruited from hospital and written consent given
Sample size a problem - inclusion and exclusion criteria addressed
Interviews and conducted in convenient place for patients
Don’t mention handling, storage and destruction of data
Research Design and Data Collection
Results should be viewed as ‘hypothesis-generating data’ due to small sample size and high attrition rate
Position of tumor was not a selection criteria - ‘important determinant of quality of life outcome and degree of physical limitation’
experiences of caregivers of people with brain cancer
patient experience beyond 12 months.
Findings and Future Work
Less than 2% of all cancer research funding used for brain tumour research
Around £2.5million spent on brain tumour research annually
Rely on voluntary donations
The Largest Dedicated Brain Tumour Charity
Research Project – Developing and testing novel therapies targeting invasive behaviour of human glioblastoma tumours.
Glioblastoma tumours - one of the most common types of tumour - very aggressive and invade surrounding brain tissue.
Rho pathway thought to play a key in invasive properties
Glioblastoma model in mice has been developed
Model may be used to test new drugs if Rho pathway found to be responsible
Success would prolong the survival of glioblastoma patients
Understanding Brain Tumours
Clinical Trials: Human Volunteers
Glioblastoma Project: Animals (mice)
Clinical trials to test new treatments
The Clinical Trials database aims to help patients access the most accurate and up-to-date information about trials for new brain tumour treatments and find out whether or not they are eligible to take part.
Medical Innovation Bill- Position Statement
"At the Brain Tumour Charity, we are committed to improving patient safety and quality of life for brain tumour patients."
Clinical Trials Database
“The creation of this database is empowering people through information. It may be that they find there are no clinical trials suitable for them but at least they will know that, rather than wondering whether there is a trial out there that they could be taking part in”
The Brain Tumour Charity fully recognizes the value of clinical trials in driving innovation in medical research and finding new medicines.
Data Protection Act: Consent and confidentially
High standards of animal welfare
Necessary to advance understanding of serious health conditions
3R's - Refine, Reduce, Replace
The Fundraising Promise is a really important document because it tells you how your chosen charity will behave when raising money. It is a key part of our scheme and is part of the standards our members sign up to when they join. The Promise sets out six key pledges that centre on honesty, accountability and transparency
The Fund-raising Promise
Molassiotis, A., et. al 2010
Find new treatments
More accurate diagnosis
Most appropriate treatment for individual patients
Headsmart: Be Brain Tumour Aware