ACT-BT information for patients

Please speak to your oncologist, a Clinical Nurse Specialist or research nurse if you’d like to be referred to the ACT-BT panel. They’ll need to complete a simple form online to make the referral and then email the form to the ACT-BT team using [email protected].

They can find this form and more information about making a referral on our information for clinicians page. 

The only clinicians that can make a referral to the ACT-BT panel are:  

• oncologists  
• Clinical Nurse Specialists with sign off from an oncologist
• research nurses (with sign off from an oncologist).

Unfortunately, during the ACT-BT pilot phase, we aren’t accepting referrals from other healthcare professionals.  

We do understand that some people living with a brain tumour – particularly low grade brain tumours – may not have access to an oncologist, Clinical Nurse Specialist or research nurse at this time. 

If this affects you or somebody you’re caring for, we’d love to hear from you so we can continue to make improvements to ACT-BT in the future. You can contact the team by emailing [email protected].

Any person over the age of 16 and who’s been diagnosed with a primary brain tumour can be referred to the ACT-BT panel. And only if they agree to the referral.

It doesn’t matter if you’ve been diagnosed recently, are experiencing a recurrence of your tumour or have already received treatment. However, different clinical trials will have different eligibility criteria that may be based on these factors.

No, the person diagnosed with a brain tumour has to explicitly agree to being referred to the ACT-BT panel. A loved one or carer can’t do this on their behalf. 

We expect that the panel will be able to discuss referrals within one week of receiving them and provide feedback to the referring clinician within two weeks of the referral being made. We’re encouraging clinicians to aim to discuss the feedback with you and decide what the next steps are within one week of receiving the feedback.

If a trial is identified and you want to take part, your clinician will make the referral.

Unfortunately, there are currently only small numbers of brain tumour clinical trials happening at any one time and each trial usually has strict eligibility criteria. This means there may not be a suitable trial available for everybody referred to the ACT-BT panel. 

Even when a suitable trial is identified, it’s possible that you won’t be able to take part because you’re found to be ineligible after further review or screening. 

If there are no suitable trials or you don’t want to take part in the available trials, your details will remain in the ACT-BT database (unless you opt out) and the clinician who made the referral will be notified if a suitable trial opens. 

To get the best results, there are typically strict eligibility criteria for those who take part in the study. This could include factors like your previous treatment, genetic profiling, age and whether your current level of health – for example, other illness or conditions – would make participating in the trial inadvisable. 

The ACT-BT panel will be familiar with these and can provide guidance specific to each person being referred to the panel. 

Ultimately, the final decision regarding eligibility will be made by the team at the recruiting site.

As a first step, we’d always encourage you to ask your clinicians why they don’t want to refer. It might be that they just haven’t heard of ACT-BT before and might want more information on it – if so, you can share our information for healthcare professionals. 

You could also contact our Support and Information team to share your experience so we can advise you further and share the feedback with the ACT-BT team. 

Under the current NHS constitution, you have the right to ask for a second opinion. If you’d like to pursue this, we advise reading our information about second opinions. 

If all else fails, you can contact the Patient Advice and Liaison department at the hospital you’re being seen in. They can help you resolve issues and maintain effective communication with your healthcare team. 

Professor Susan Short from the University of Leeds, who put forward this initiative, is the ACT-BT lead. She runs a portfolio of clinical studies for people with brain tumours.     

The panel will be made up of 10 multi-disciplinary experts from across the UK. Each of them is a lead researcher of a national study and will be able to provide accurate information about study status and recruitment criteria. 

ACT-BT is led and sponsored by Leeds Teaching Hospitals NHS Trust, who are the data controller for all personal data collected as part of this programme. 

All person-level data will be held within secure NHS IT infrastructure. Individuals accessing this data are required to complete information governance and data security training and adhere to strict information handling standards. 

The Brain Tumour Charity is supporting the promotion of ACT-BT but does not collect or process personal data relating to patient referrals or participation. 

If you follow a link from our website to the ACT-BT referral portal, you will be leaving our website and only oncologists, Clinical Nurse Specialists and research nurses will be able to make a referral. Any personal data provided will be processed by Leeds Teaching Hospitals NHS Trust in accordance with their privacy notice. 

The Brain Tumour Charity does not receive identifiable patient data from ACT-BT. We may receive anonymised and aggregated data to support our research and charitable activities.

The Brain Tumour Charity is funding ACT-BT’s set up and running costs for an initial eight-month pilot phase.