Patrick Kemmeren: ‘Over the past twenty years, there has been an enormous increase in the amount and complexity of data over the full breadth of life sciences. We also see this in the Máxima for almost all facets of preclinical research. ‘Big Data’ can therefore no longer be ignored in most studies. Big Data mainly applies to research that uses the information stored in our DNA and all the information derived from it. For example: what mutations are present in the DNA of cancer cells? How do these mutations relate to the abnormal behavior of those cells and their interactions with their environment? By collecting and analyzing this data on a large scale, we gain much more insight into the different forms of childhood cancer and how this affects the diagnosis and treatment of children with cancer.’
Data stewards
'The history of data collection in the context of clinical studies goes back further: some 70 to 75 years,’ says Harm van Tinteren. ‘In our quest for better outcomes for children, we aim to distinguish ever more characteristics of the patient and the tumor. With that knowledge we can offer more refined treatments with better survival and fewer side effects. For this we need increasingly many data from patients and tumors. Standardization is of great importance to enable analysis of clinical data: the more we systematically record the characteristics of diagnosis, treatment and outcome, the more convincing the findings will be.’ Patrick adds: ‘The data that we generate in preclinical research is also complex. Due to the quantity and diversity of the data, you quickly lose oversight of the available data and tools that you can use to process that data. Data stewards in the various research groups ensure greater awareness and knowledge of good data governance before, during and after the research. In this way we prevent loss of data and we encourage the reuse of this data for other studies.'
More than the sum of its parts
‘Because clinical data is our bread and butter in the Trial and Data Center,’ says Harm, ‘we have 35 people who are involved in all aspects of prospective data collection on a daily basis: security, privacy, you name it. International standards exist for recording and processing clinical data. Because our center deals with sensitive information about the health and treatment of children with cancer, it is of course a priority to constantly observe the policies in the field of privacy and to handle the data safely.’ Patrick: 'There are substantial differences between clinical studies and lab research in the view on good data management, but it is important that we know how to find each other. There’s a reason that care and research into childhood cancer have been brought together in the Máxima: good cooperation offers more than the sum of its parts.’