For a while now our patients, carers and supporters, usually with a hint of desperation in their voices, have been asking ‘why don’t clinicians know more about my brain tumour?’ or ‘how come the facts and stats about brain tumours are so out-dated?’
Well our response is usually ‘Good question!’ closely followed by a statement as to how ‘the system’ isn’t joined up enough to record data centrally, making it impossible to turn the brain tumour data into information that shows a national or international picture. We’re also quick to add that there’s a huge disparity in the amount of funding that goes to brain tumour research when compared to other cancers.
Well, we’re pleased to tell you that change is afoot.
This change comes in the form of the National Brain Tumour Registry, a government sanctioned project to improve and join up brain tumour data collection. Started in 2007, the project is making great progress, and is spearheaded by an inspirational chap called Jem Rashbass.
We met with Jem recently in London and talked about the vision and challenges that the National Brain Tumour Registry faces. He answered our questions, and we’re sharing these answers with you here to help shed a little light on this fantastic initiative and the progress it’s making.
So make a cuppa, and take 5 minutes to find out how the information black hole that currently surrounds brain tumours could soon be filled…
What is the National Brain Tumour Registry and what is the vision?
“The Brain Tumour Registry will collect information on all cases of benign and malignant brain, pituitary and skull base tumours diagnosed in the population of England.“
The National Brain Tumour Registry is an initiative of the National Cancer Information Network (NCIN) and is part of the network of English Cancer Registries. The Brain Tumour Registry will collect information on all cases of benign and malignant brain, pituitary and skull base tumours diagnosed in the population of England. The data will be quality assured by experts to create a dataset that is consistent and accurate.
Although cancers are classified by their appearance under the microscope, as we learn more about the molecular causes of cancer, it is increasingly clear that there are different subtypes even within the classical groups. This is particularly true for brain cancers where even the microscopic appearance identifies more than 130 types.
The registry will be a collection of highly accurate, consistent information on every case. It is only by collating this data from many patients that we can understand how the cancer type affects the ways in which that individual patient presents and how one person’s illness will respond to treatment.
How will the Registry help people who are diagnosed with a brain tumour?
“For us to understand how to treat all tumours, we need to understand each one in some detail so that we can recognise the similarities and differences and identify patterns.”
Cancer is a complex disease and the more we understand about each case the more it is clear that the response to treatment can vary from one individual to another with apparently the same tumour type. As we get a better understanding of the genetic and molecular basis of disease it is clear that the way an individual’s cancer grows and can be treated is highly personal. For us to understand how to treat all tumours, we need to understand each one in some detail so that we can recognise the similarities and differences and identify patterns.
This is particularly true of brain tumours which are relatively rare. In England there are around 10,000 newly diagnosed primary brain tumours of which there are four types which account for around 6,000 of these tumours; the remaining 4,000 can be divided using a variety of features into further 130 different types. Yet even in the most common types there is significant variation in the way that a tumour will behave within one individual. If we are to understand this variation in the whole range of brain tumours we need very good data on individuals and each case. This is the aim of the Brain Tumour Registry.
When did work start?
We first outlined our vision for a National Brain Tumour Registry in November 2007.
Can you give an overview of how the work has progressed since you started the project? What challenges have you faced?
There is a network of Regional Cancer Registries across England and for many years these organisations have worked together to collect information on all cases of cancer diagnosed in the population. The focus for the English Cancer Registries has been to collect epidemiological data to understand the incidence, mortality and survival of individual tumours in the population.
Over the last 10 years with the introduction of the NHS Cancer Plan we have greatly improved the co-ordination and treatment of many cancers in the NHS, however the data to measure outcomes and to optimize the best care for each individual has lagged behind. To address this the traditional cancer registry working processes have been modernized and over the last few years we have started to collect more detailed and timely information. Through the National Cancer Information Network we have created individual site specific Registries with an overall responsibility for individual tumour sites. The Eastern Cancer Registry and Information Centre is responsible for the development of the National Brain Tumour Registry.
“If we were to be able to answer the kinds of questions now being asked, we would need much more detailed information.“
Before we started work on the new data collection for the National Brain Tumour Registry we looked at the information that was available from the existing Cancer Registries. It was clear that although it was possible to make general statements about brain cancers from the registry information, the detail was not good enough to support near-real-time clinical practice or research. If we were to be able to answer the kinds of questions now being asked, we would need much more detailed information.
The Cancer Peer Review process and Improving Outcomes Guidance that had been introduced into the NHS has led to the establishment of 28 Neuroscience Centres. With these come clear pathways for case referral and diagnosis across clinical networks. This relatively small number of lead centres provided an attractive opportunity for direct collection of new clinical data from Multi-disciplinary Team meetings to support the development of a National Brain Tumour Registry. The NCIN agreed to allow us to run a pilot with brain tumours, that might serve as a model for other rare tumour sites, to see if we could establish new data flows from individual clinical centres to improve the quality of the dataset.
We have been driven by a pragmatic “just do it!” approach to get the data collected from individual centres. We know at ECRIC that clinical teams are busy and that data collection can often be difficult, time consuming and an overhead that does not directly benefit the local team. We aimed to change this and therefore set about to collect any data that local Neuroscience Centres already had available and to design the Registry systems to consolidate this data as best we could from across all the individual clinical teams. We used our specialist outreach team to support individual local clinical teams, MDT Co-ordinators and Trust IT Departments to find the simplest but secure way of sending data to the Registry. We then used the expertise within the Registry to process data in a whole range of different formats to build a single national repository.
“We have been driven by a pragmatic “just do it!” approach to get the brain tumour data collected from individual centres.”
One of the key tricks to improve data quality is to provide rapid and timely feedback to the clinical team on the data that they have submitted to the Registry. In the past there has been little immediate benefit to the team from the data that they submit; it would take so long to give data back that they had forgotten what had happened several years earlier. We have therefore produced systems that provide rapid feedback reports on the web to Multi-Disciplinary teams. The reports give details on the quality of the data they have submitted in the previous months and how their data compares with those from other centres. This “data spiral” allows teams to look at the quality of their own data and provides some gentle competition between organisations to be the most comprehensive, accurate and consistent data suppliers to the National Registry.
In general the work to establish a National Brain Tumour Registry has been met with considerable enthusiasm and support throughout the Neuroscience community in England.
Tell us a little bit about your approach? What sort of mindset is required to have made such progress?
The philosophy taken to develop the National Brain Tumour Registry is slightly different from the more traditional approach used to build Registries across clinical communities.
“We have taken the view that clinical teams know best and are most likely to collect clinically relevant data items on their patients.“
We have taken an entirely pragmatic approach with the aim of lowering the barrier to data submission and side-stepping or at least delaying any significant discussions on core data sets, mandated data items or clinical systems. We have taken the view that clinical teams know best and are most likely to collect clinically relevant data items on their patients.
However, without central standardization, teams will inevitably collect clinical information in slightly different ways and therefore it may be difficult to compare like-with-like from different centres. Experience has shown that this inconsistency is best addressed by highlighting the differences between clinical teams in data that has already been collected and allowing the community to reach a practical consensus – some differences do not matter or can be resolved using technology. The more traditional approach reverse tries to create a consensus on abstract data formats with the aim of producing a data standard in advance of any data collection – it is a theoretical exercise that can sap the will from even the most faithful. Not only is defining a dataset a challenge – but once it exists, someone has to enforce change on individual organisations – and all of this occurs before any benefit has been achieved for the individual unit or the whole community.
Will there be any synergies between your work/data and the data collected by any Brain Tissue Banks?
“…the data is of such good quality and comprehensive coverage that the potential to support tissue based research into brain tumours is remarkable.”
The information we collect in the Registry is identifiable patient information and there is permission under Section 251 of the NHS Act of 2006 to collect this information without the need for informed patient consent. How this data is then used is highly controlled but with the correct ethical permissions and information governance the data can be linked to identifiable tissue specimens taken from individuals. The Registry itself does not hold tissue samples or storage, it is purely a data repository but the data is of such good quality and comprehensive coverage that the potential to support tissue based research into brain tumours is remarkable.