This section provides links to organisations likely to be of interest to researchers or healthcare professionals working in neuro-oncology and not included in other parts of our website. We specifically do not include patient organisations, of which there are very many working within this sector. We regret that BNOS is not able to include content or links relating to individual members’ activities, websites or social media.
Government and Regulatory Bodies
Translational and Clinical Research
Clinical Trial Portals
Educational and News Alerts
(including those where individuals can sign up for regular e Bulletins)
Patient organisation links
This section of the BNOS website is intended for patient organisations to promote new reports, campaigns, meetings of/for healthcare professionals, educational materials, journal publications etc to medical and allied professionals and researchers. It is not intended for news that is more appropriate for patients and carers. Information for inclusion should be sent to firstname.lastname@example.org
Brain Tumour Tissue Bank
Brainstrust are campaigning to increase the number of people consenting to donate their resected brain tumour tissue to research. Helen Bulbeck, Director of Services and Policy at brainstrust, and member of Independent Cancer Patients Voice, puts forth what needs to be done in the section ‘Brain Tumour Tissue Bank: The brainstrust Proposal’. The full article: “The Importance of Quality Patient Advocacy to Biobanks: A Lay Perspective from Independent Cancer Patients Voice (ICPV), Based in the United Kingdom” can be found in the journals below:
There is also considerable information for clinicians including pathways and sample forms to be used when obtaining consent available on their website www.brainstrust.co.uk
Brain tumour research e-petition prompts government action
Following an e-petition started by Maria Lester, with the support of Brain Tumour Research, the House of Commons Petitions Committee decided to look into the issue of funding for brain cancer research. A formal hearing was held on 3 November – more information.
All-Party Parliamentary Group (APPG) on Brain Tumours
The APPG on Brain Tumours will meet on Wednesday 9 December, from 4-6pm, in Westminster to discuss the new five year Independent Cancer Taskforce Strategy and how it will improve survival, quality of life and services for people affected by a brain tumour. In attendance will be Sean Duffy, the National Clinical Director for Cancer at NHS England, who will provide an overview of the strategy and plans for its implementation.
The Giles’ Trust
Former Warwickshire and England cricketer Ashley Giles, together with his wife, Stine, have helped launch a brand new fund to support brain tumour care at the Queen Elizabeth Hospital Birmingham.