I got involved in the HARMONY project probably about eighteen months ago when I saw an advert on the IMI website and it was all about collecting big data for better outcomes. That really appealed to me because my research in the UK has all been about collecting large clinical trial datasets and annotating them with genetic information and then using that information to identify better ways of treating patients. So I saw HARMONY as a vehicle whereby I could take my research from a UK level on to a more EU or international level. So I volunteered to become a key opinion leader in Work Package 2 covering haematological malignancies in childhood disease but also my major interest is acute lymphoblastic leukaemia, so I span two disease areas in that respect.
So is this an exciting opportunity to gather datasets from across Europe?
Absolutely and hopefully it will do exactly what it says on the tin and harmonise things. That’s what we want, we want to be able to collect data all the way from the Czech Republic through to Germany, Italy and the Scandinavian countries and bring it all into one big data warehouse. That’s my big excitement is to create a big data warehouse where we have huge amounts of data. Of course for many of us we’ve been doing this on a very small scale for a number of years now; it’s quite common in paediatric ALL to collect data about a particular gene in a cohort of 300-400 patients from maybe two or three countries. But the idea to be able to do it on a much larger scale where we can look at hundreds of genes at the same time and start to look at 10,000-15,000 patients rather than 300-400 is really exciting. So it means we can take all our research ideas up to the next level and get the support of everything that HARMONY provides in terms of the ethics and the consent and the link into the pharmaceutical industry etc. It’s a very exciting project and I sincerely hope that it will take off.
When will patients see a benefit?
That’s going to be a hugely variable answer, it’s an absolutely key question – when are the patients going to benefit? For some diseases, like the AML project that Lars is involved with, potentially you could see some benefits to some patients quite early on. It depends on how quickly we can pull data together, how the analysis goes and whether or not you can identify a particular genetic target that can be treated and therefore the patient could benefit quite quickly. I don’t want to raise the patients’ hope too much and say that there’s suddenly going to be this onslaught of improvement because I think that’s highly unlikely. But I do think that over the next two or three years there might be a handful of examples where rare genetic subtypes of diseases may see a benefit in their treatment because of HARMONY. But in the medium term, five to ten years, there could be a much greater improvement in patient benefit by allocating treatment more effectively across the board.