by ecancer reporter: Clare Sansom

The world’s largest database of cancer cases is being set up by Public Health England, the umbrella body established by the UK Government in April 2013 to oversee all English public health provision.

This will collect and collate data from all the approximately 350,000 cases of cancer diagnosed yearly in the 50 million strong population of England, updating it in as close to real time as possible. 

Essentially, this new cancer patient database is a modernisation of England’s cancer registries.

Like all developed countries, the nations of the UK have maintained comprehensive, accurate registries of cancer patients since the mid-twentieth century, and these have been used to produce the often-quoted figures for cancer incidence, mortality and survival.

These headline statistics will still be available from the new database, of course, and they will become even more precise and up to date.

However, data will now be collected from a much wider variety of sources; clinical data, including imaging and histopathology reports, treatment decisions and their outcomes will be obtained from each of the 166 acute health trusts that manage English hospitals.

This will be complemented by data from screening programs, results of molecular tests on tumour samples, screening results and replies to Patient Reported Outcome Surveys.

The database will also hold records of over 11 million historical cancer cases in England, going back about thirty years.

“It will be the most comprehensive, detailed and rich clinical dataset on cancer patients anywhere in the world”, says lead developer Jem Rashbass, Public Health England’s National Director for Disease Registration.

The need to update, expand and consolidate England’s cancer registries (and those of the UK as a whole) has arisen in part, at least, from the accelerating trend towards personalised cancer medicine.

Whereas a generation ago cancers were categorised based only on their site or possibly their histology, we now realise that the molecular profile of each tumour – and even of the same tumour as it develops over time – will be subtly different.

It is now well known that tumours at the same site, or even with the same histology, but with different molecular profiles will respond differently to therapy.

For example, ten different subtypes of breast cancer with different optimal treatment regimens and different prognoses have already been identified from their gene expression patterns [1].

Furthermore, the cost of DNA sequencing is now dropping so fast that it is likely that  complete sequencing of tumour genomes, and perhaps also of complete patient genomes, will become routine in developed countries within a relatively few years [2]. 

However, before this rich molecular information can be applied in the clinic to select the most appropriate therapy for each patient, and in the laboratory to develop new ones, it must be matched with equally rich clinical data on individual patients: this database will be able to provide that.

The database will have many benefits for clinical oncologists, who will have immediate access to consolidated data from their own patients in order, for instance, to select the most appropriate patients for a particular clinical trial.

They will also be able to compare their own clinical performance with that of their peers.

Patients will have access to their own data, and it will be incorporated into aids for clinical decision making such as PREDICT, a free online tool for predicting breast cancer outcomes that is available to patients as well as their clinicians.

Emma Greenwood, Cancer Research UK's head of policy development, has welcomed this exciting development.

"It's great news that this national database has been set up. It means we have all the UK's cancer information in one place making us well equipped to provide the highest quality care for every cancer patient… and to further cancer research”, she said.

References

[1] Curtis, C., Shah, S.P., Chin, S-F. and others, and the METABRIC group (2012). The genomic and transcriptomic architecture of 2,000 breast tumours reveals novel subgroups. Nature 486: 346–352.

[2] Steensma, D.P. (2013). The Beginning of the End of the Beginning in Cancer Genomics. New England J Med 368: 2138