ACT-BT information for healthcare professionals
Find out more about our Access to Clinical Trials for Brain Tumours (ACT-BT) project and learn how to refer patients.
Make a referral to the ACT-BT panel
Oncologists, Clinical Nurse Specialists and research nurses can refer patients over the age of 16 who’ve been diagnosed with a primary brain tumour and agree to the referral. You’ll then receive timely, personalised information on clinical trials they may be eligible for.
How does ACT-BT work?
Step one
After discussing research participation with your patient and getting their agreement to be referred to the ACT-BT panel, you complete the simple form online to make the referral. After completing the form, you’ll need to email the form to the ACT-BT team using [email protected].
Step two
Once a case is referred, it’s assigned a unique reference number, the patient’s details are added to the database and the referral is scheduled for review.
For this pilot phase, we’re aiming to review each case within approximately 10 days of the referral being made.
Step three
The ACT-BT panel discusses the case at the weekly panel meeting and identifies any clinical trials that may be suitable. This information is then sent back to the clinician who made the referral as soon as possible.
For this pilot phase, we’re aiming to provide feedback within two weeks of the referral being made.
Step four
The clinician and patient discuss the clinical trials identified by the panel (ideally within one week of the clinician receiving the recommendations).
If a suitable trial is identified and the patient wants to take part, the clinician will then make the trial referral.
However, if there are no suitable trials or the patient doesn’t want to go forward with the recommendations, the patient’s details will remain on file (unless they opt out) and the clinician will be notified if a suitable trial opens.
Checklist for making a referral
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- confirm diagnosis
- gather required information
- discuss with patient
- confirm treating centre.
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- Name (this will not be presented at panel meetings)
- Date of birth (this will not be presented at panel meetings)
- NHS number (this will not be presented at panel meetings)
- Confirmation of consent.
- GP details
- Demographics (gender, age, postcode, ethnicity).
- Performance status and estimated life expectancy.
- Date of diagnosis.
- Diagnosis details, including pathology, molecular pathology, and genomic reports.
- Full treatment history (surgery, radiotherapy, chemotherapy, clinical trial participation).
- Up to date imaging reports (e.g., MRI).
- Significant comorbidities.
- Drug history, including steroids and antiepileptics.
- Drug allergies.
- Relevant toxicities (e.g., bone marrow, liver function).
- Specific questions for the panel.
- Any additional relevant clinical information.
- Referrer details and follow up contact information (referrer or CNS/RN)
Talking to your patient about ACT-BT
- reassure your patient that clinical trials don’t use unsafe or untested drugs
- make it clear that even if they are referred to the ACT-BT panel, there may not be any clinical trials they can take part in
- explain that being referred to the ACT-BT panel doesn’t mean they have to take part in a clinical trial
- encourage them to ask questions about participating in clinical trials
- use plain English rather than medical jargon
- direct patients to our community guide to ACT-BT if they want to find out more.
- make a referral without the patient’s agreement
- forget to make sure you have all the information required to make a referral
- assume a patient won’t want to discuss clinical trials based on their background
- forget that you need to email complete referral forms to [email protected].
- make it seem like they can’t be referred at a later date if they aren’t ready at the moment.
Frequently asked questions
You can make a referral to the ACT-BT panel if you’re:
- an oncologist
- a Clinical Nurse Specialist (with sign off from an oncologist)
- a research nurse (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 a patient of yours, 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 patient over the age of 16 and who’s been diagnosed with an adult primary brain tumour can be referred to the ACT-BT panel. And only if they agree to the referral.
It doesn’t matter if patients have been diagnosed recently, are experiencing a recurrence of their illness or have already received treatment. However, different clinical trials will have different eligibility criteria that may be based on the treatment they’ve received or when they were diagnosed.
No, the patient themselves has to agree to being referred to the ACT-BT panel and a loved one isn’t able to do this on their behalf.
We expect that the panel will be able to discuss referrals within approximately 10 days of receiving them and provide feedback within two weeks of the referral being made.
Where possible, we recommend that clinicians discuss feedback with the patient within a week of receiving it.
If a suitable trial is identified and the patient agrees to take part, the clinician should make the referral.
Clinical trials have strict eligibility criteria, which means there may not be a suitable trial available for every patient referred to the ACT-BT panel.
Even when a suitable trial is identified, it’s possible the patient won’t be able to take part because they’re found to be ineligible after further review or screening.
We recommend being very transparent about this when you initially discuss ACT-BT with your patients.
If a trial isn’t available at the time of referral and the patient consents, we’ll keep their details in our database and will notify you (the clinician who made the referral) if any new trials become available that they may be eligible for.
To get the best results, there are typically strict eligibility criteria for those who take part in the study. This could include factors like a patient’s diagnosis, what previous treatment they have received, the molecular profile of the disease and how well a patient is.
The ACT-BT panel will be familiar with these and can provide guidance specific to each patient being referred to the panel.
Ultimately, the final decision regarding eligibility will be made by the team at the recruiting site.
During the pilot phase, there are no limits on how many referrals a clinician can make.
You can download the PDF of the ACT-BT referral form using the button below.
After completing the ACT-BT referral form, you should email it to the ACT-BT team using [email protected].
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. Any personal data you provide 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.
Have more questions about ACT-BT?
Speak to our Healthcare Engagement team today by emailing [email protected].