Purpose

The Neuro-Oncology JLA Group has been set up to identify and promote the clinical research questions of greatest importance to those with tumours arising in the brain or spinal cord.

The Neuro-Oncology Group Priority Setting Partnership will bring together patients, carers and clinicians to establish the ‘Top 10’ clinical research questions in the area of brain and spinal tumour, including: prevention, diagnosis, treatment, rehabilitation and palliative care.

By promoting the ‘Top 10’ clinical questions to researchers and funders, our Priority Setting Partnership will give patients, carers and clinicians the opportunity to influence the research agenda. Our hope is that this will ensure the time and money available for research is directed to the issues that matter most.


The Process

A Priority Setting Partnership is a group of patients and clinicians who are brought together to identify research priorities for the treatment of specific health problems.

 

Any Priority Setting Partnership follows a set of guidelines established by the James Lind Alliance in order to determine areas where there is lack of evidence in order to promote research in these areas. These questions are then entered into the UK Database of Uncertainties about the Effects of Treatments (UK DUETs) and can then be used to guide research and clinical trials.

A short description of each step in our process is described below. Find out more about the process! You can read our brain and spinal cord protocol here.

STEP 1

Initial Steering Group Meeting

An initial Steering Group meeting was held in July 2013, at The King's Fund 11–13 Cavendish Square London, which established principles of the Priority Setting Partnership. The Steering Group involved clinicians, patients, charity representatives, JLA and Cochrane Collaboration group members.

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STEP 2

Identifying Treatment Uncertainties

The Steering Group then constructed a survey for patients, carers, clinicians and other interested individuals to complete in order to determine unanswered clinical questions about the medical condition.

  The Neuro-Oncology Steering Group proposed that these questions can related to:

  • Prevention
  • Diagnosis
  • Surgery
  • Radiotherapy
  • Chemotherapy
  • Treatment for other cancer-related symptoms e.g. Epilepsy, Headaches, Sleep
  • End of life care and bereavement
  • Other
The survey is accessible on this website, and publisised internally and externally through charity, clinical and research organisations.  

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STEP 3

Refining questions and uncertainties

The responses to the survey are then collated and refined in order to categorise questions and ensure they are unanswered.

  In the Neuro-Oncology group, this will be carried out by researchers based at the Edinburgh Centre for Neuro-Oncology who will collate the responses and categorise the questions. The researchers will then perform a literature search, with guidance from members of The Cochrane Collaboration, to ensure these questions have not been previously answered by existing research.

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STEP 4

Prioritisation

'Unanswered' questions will then be prioritised by the Steering Group containing patients, carers, clinicians and health and social care professional representatives, to rank the importance of these uncertainties.

  The final ‘Top Ten’ questions are then determined through further group discussion, facilitated by the James Lind Alliance to ensure fairness.

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STEP 5

Findings and Dissemination

It is anticipated that these findings will then directly influence future research calls by NHS charity funding organisations. The results will be published both internally and externally through clinical, research and charity platforms in order to answer these uncertainties.

  This process is guided and supported by the James Lind Alliance. Click here to watch more about what the James Lind Alliance does, or click on the speaker to listen.

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Timeline

November 2013 - Designing website and logo
December 2013 - Jan 2014 - Preparing survey and website
March - May 2014 - Survey available to the public
June - July 2014 - Shifting and researching questions
July - August 2014 - Prioritising questions
September 2014 - Final 10 questions
October-Dec 2014 - Sharing results & promoting research