The main way you can help is by completing our survey with any questions you have about brain and spinal cord tumours. We are looking for questions that research hasn’t found the answer to yet, but you don’t have to worry about that. We’ll check to see if your question has already been answered or not. You can fill in the survey online by clicking here.

Alternatively, Laura or Julia will send you an electronic or paper copy if you email jla@exseed.ac.uk or call 0131 537 2875.
Anyone with an interest in brain and spinal cord tumours can complete the survey, even if they have no personal experience. But we would really like to hear from people who are living with a brain or spinal cord tumour or those who are close to them. And from people who have suffered the loss of someone they love due to a brain or spinal cord tumour. We also really want to hear from health professionals whose day-to-day work involves treating or supporting those with brain and spinal cord tumours.
In accordance with the JLA’s fundamental aims, only those representing patients and clinicians (who would not normally be involved in setting the clinical research agenda) are able to participate in this project. Non-clinician researchers or organisations which represent them will be excluded from the PSP. Representatives of organisations deemed by JLA or the Steering Group to have conflicts of interest will also be excluded.
The demographic information we ask for is to help us ensure that different interest groups are represented in the findings. If you would prefer not to share this information, that is fine. Any personal information you do supply will be used only in conjunction with the Priority Setting Partnership, which will run until October 2014. If you have supplied an email address and we think you could help us beyond that date, we will contact you to ask if you are happy to be added to a database.
It doesn’t matter if your unanswered question has previously been researched, as we will check that for you. It’s most important that you ask any question that is unanswered for you. If your question has been answered, and others are also asking a similar question, this highlights a gap in communication. This will help us to identify answers that need to be made more readily accessible.
You can ask as many questions as you’d like about any area of prevention, diagnosis, treatment and support
That’s absolutely fine. Laura or Julia will send you an electronic or paper copy if you email jla@exseed.ac.uk or call 0131 537 2875.
The survey will be available to complete from March - May 2014.
Guidelines provided by the James Lind Alliance detail the process all Priority Setting Partnerships must carry out when creating a list of the most important unanswered questions, or treatment uncertainties.
Find out more about this process here.
All questions are reviewed by a researcher. If your question is unanswered by research then it will form a list of questions to be prioritised to a ‘Top Ten’. Any questions that are not prioritised will still be published as an unanswered question that can form the basis for future research.
Please fill in the ‘Contact Us’ form here to ask the group a question. We will get back to you as soon as possible.
The top ten unanswered questions will be promoted through research networks such as the NCRI and governmental agencies such as the NIHR to encourage research, as a priority, in these areas. Neuro-Oncology Groups, such as the British Neuro-Oncology Society and other Sub-specialty Societies will also highlight the unanswered questions. Five of the “unanswered questions” will be selected for consideration as titles for Cochrane Reviews and all unanswered treatment questions will appear on the DUETs database.
Recalling personal experiences associated with tumours of the brain and spinal cord may potentially lead to upsetting thoughts or emotions. Further support can be found through:

The Brain Tumour Charity
www.thebraintumourcharity.org
Support and Info Line: 0808 800 0004 (Mon-Fri 9am-5pm)
support@thebraintumourcharity.org

brainstrust
www.brainstrust.org.uk
0198 329 2405 (24/7)
hello@brainstrust.org.uk

Brain Tumour Action
www.braintumouraction.org.uk
0131 466 3116 (24/7)
lorraine@lmtherapies.co.uk
Any questions about prevention, diagnosis, treatment or care are welcome.

Here are some examples of questions that were submitted for other health conditions:

Are breathing exercises helpful in controlling asthma?
How effective is gargling aspirin to relieve a sore throat?
Which is safer and more effective for treating eczema: steroids or calcineurin inhibitors?
Does early diagnosis and aggressive treatment influence the course of disease?
What is the best surgical procedure to perform in treating HS e.g. incision & drainage, local excision, wide excision?
The 'Top 10' uncertainties will be publicised widely to ensure that researchers and those who fund research really understand what matters. This project is being facilitated by the James Lind Alliance, which is part of the National Institute of Health Research (NIHR). The top ten uncertainties will be directly reported to the NIHR Evaluation, Trials and Studies Coordinating Centre, which provides evaluation and funding of research for the National Institute for Health Research (NIHR). They will be promoted to many other research organisations and funders in the UK and abroad.

The questions that do not make the top ten are not forgotten. They are all entered into a large open access database run by the NHS. You can find it at http://www.library.nhs.uk/duets/