I’m responsible for work package 4. Work package 4 represents the data platform of the project but the data platform will only function after data have been provided for the data platform and that’s going to happen within the first year. So the data platform and what actually the data platform is supposed to do will only function in year 2, that means in a year from now. What the data platform is then to provide will depend on what’s in the data platform so we envision that we will have clinical data and laboratory data and also outcome data in a year from now on the data platform, hopefully on all of the five or six malignancies that are the scope of the project. That means ALL, AML, CLL, MDS and multiple myeloma, these are the six diseases. We hope, of course, that we will have in the data platform data that are of interest to the patients, the doctors, the health management authorities and so on but we don’t know yet.
How will you manage the transfer of sensitive patient data?
This is all speculation right now and that’s actually exactly the subject of the meeting that will take place now. The data provider, that is work package 3, that will meet with work package 5, these are the people who manage, who evaluate the data and then the organiser of the data platform, that’s me. We will get together right now and we will see where we will end. Hopefully we arrive at a meaningful analysis of the data platform but just to let you know where the difficulties are. We have to collect the databases from different sources; nobody has 10,000 AML data or 20,000 available so you’ve got to get the data from various trial groups and from various countries. After you have done that you have to account for data privacy. That means you have to somehow put the data together, itemise them, harmonise the data, curate the data, whatever that means; this is the method of data specialists. And then you have to reassemble the data according to the outcome criteria you are interested in. So, for instance, to find out which group of patients does best; which group of patients is best suited for certain treatments and so on. I don’t know the questions yet, this is just pure speculation, but this is what the project is for. You cannot expect outcome analysis and data right now after the project has not really started yet.
What makes a platform?
A good platform would give many answers and a poor platform would not provide answers. We want answers and the more data we have, the more likely it will be that we have answers – answers to the questions which we don’t really know yet.
