In this first newsletter, we would like to introduce you to The Netherlands Federation of UMCs programme Data4lifesciences: what is Data4lifesciences, why do we need this programme, who is involved, and what is the status? Also in this newsletter more information about HANDS, a product of Data4lifesciences. This Handbook for Adequate Natural Data Stewardship will assist every researcher in their research and provides both guidelines and pratical tools, infrastructure and expertise for handling research data.
The Data4lifesciences infrastructure should lighten the load of scientists and give them easy access to high-end technology. ´Researchers urgently need an efficient shared infrastructure so that their innovations can quickly be applied in healthcare practice´, says Spinoza Prize winner Professor Cisca Wijmenga.
Cisca Wijmenga is a Professor of Human Genetics at University Medical Centre Groningen and co-director of the Dutch biobanking organisation BBMRI-NL. ‘In the near future, complete human genomes will be unravelled on a large scale. With an average of three million variants in each person’s DNA, we still have a long way to go before we can apply this information in clinical practice´, she says.
The Data4lifesciences programme is building a national infrastructure to speed up the translation of biomedical research findings into healthcare applications. The infrastructure will comprise an online catalogue of biobank samples, standardised methods to use data from electronic health records, harmonised privacy regulations, standardised IT facilities, a manual for handling research data, and safe methods to exchange data. In addition, scientists will be supported by experts in so-called shared service centres. Data4lifesciences will guarantee administrative coordination so that local facilities and expertise networks will be in line with national and international infrastructures, and vice versa.
Cisca Wijmenga: ‘Biomedical scientists face many questions nowadays, e.g., May I share human DNA sequences in the cloud? Can I use clinical data for scientific research? What should I include in a data management plan for my grant application? Where can I get sufficient computing capacity? Are the tissue samples that I need already available somewhere in a biobank? My hope is that Data4lifesciences will make it easier for scientists to find answers to these data-related questions.’
BBMRI-NL coordinates the Data4lifesciences sub-project Access to data and samples. This sub-project will make collections of biomedical samples and datasets accessible to researchers via a shared catalogue. Cisca Wijmenga: ‘There are many biobanks in Dutch research institutes. These can be very suitable for reuse. But it often takes researchers months or even years to localise the data and material they need. Data4lifesciences will connect the registries of key biobanks. The resulting catalogue can be browsed for samples and data at national level. The procedures for providing data and samples will be harmonised and there will be proper assurance of privacy protection and informed consent. This will be a goldmine for researchers; it will save them a lot of time.’
‘A national shared infrastructure is crucial for biomedical scientific research. It will help us maximise our knowledge for the benefit of individual patients. There are high hopes for precision medicine, but we need a strong infrastructure to move this forward. We are fortunate to have Data4lifesciences to help us overcome many of the hurdles. This is a shared interest of science as a whole, individual scientists, healthcare providers, and patients ... or as such, all citizens’, concludes Cisca Wijmenga.