{"id":11056,"date":"2026-05-12T13:08:34","date_gmt":"2026-05-12T11:08:34","guid":{"rendered":"https:\/\/www.hartwigmedicalfoundation.nl\/?post_type=blog&p=11056"},"modified":"2026-05-12T13:08:35","modified_gmt":"2026-05-12T11:08:35","slug":"datanexus-connects-clinical-and-genomic-data","status":"publish","type":"blog","link":"https:\/\/www.hartwigmedicalfoundation.nl\/en\/blog\/datanexus-connects-clinical-and-genomic-data\/","title":{"rendered":"DataNexus connects clinical and genomic data"},"content":{"rendered":"\n

DataNexus is a project initiated by the Netherlands Cancer Institute\u2013Antoni van Leeuwenhoek (NKIAvL) to improve data availability by integrating clinical and genomic patient data in collaboration with Hartwig Medical Foundation. Through recurring requests for clinical data, a continuous data stream is created. Linking this to genomic data provides an important boost to research quality and personalized treatment. DataNexus thus forms a powerful hub for quality control, international collaboration, and faster implementation of new insights in oncology.<\/strong><\/p>\n\n\n\n

By Frank van Wijck, science journalist<\/p>\n\n\n\n

With the DataNexus project, Antoni van Leeuwenhoek is taking an important step for both itself and Hartwig Medical Foundation. \u201cIn addition to genomic data, patients\u2019 clinical data are also essential,\u201d says Sophie Roerink, bioinformatician at Hartwig Medical Foundation. \u201cClinical data are needed to determine which treatment is appropriate for which patient. But we only received limited clinical data\u2014mainly as part of clinical trials, and far less for routine care.\u201d<\/p>\n\n\n\n

For that reason, Hartwig was eager to participate in the AvLinitiated DataNexus project, as AvL had clearly expressed the need for improvements in datamanagement. \u201cWe had several reasons for this,\u201d says pathologist Kim Monkhorst. <\/p>\n\n\n\n

\u201cWe noticed how difficult it was to keep clinical data up to date. For a long time, updates were sent by email, which was very impractical. We need a constant data stream that keeps information such as subsequent therapy lines and overall survival current. That also means we don\u2019t want to repeatedly request clinical data from Hartwig\u2014we want direct access, so we can immediately add additional clinical information. We also want access to the NGS-panel data generated by Hartwig, which until now was only stored for five years. And we want to be able to share all data\u2014not just wholegenome sequencing data\u2014with international research groups we collaborate with.\u201d<\/p>\n\n\n\n

Recurring data requests<\/h2>\n\n\n\n

DataNexus was designed to make all of this possible. \u201cThe idea is to place a kind of questionnaire in front of the database, containing clinical variables that we repeatedly retrieve from hospital information systems. This ensures that the data are updated whenever the source data change\u2014such as a diagnosis\u2014or when new information is added, like a treatment,\u201d Monkhorst explains. \u201cThink of patient age, overall survival, tumor location, whether it\u2019s a metastasis, and all the other variables you need for research. We linked this questionnaire to data from our own NGS-panels, WGS, and other sources.\u201d <\/p>\n\n\n\n

\u201cIt\u2019s a hub where all data come together,\u201d he continues. The questionnaire is requested on a recurring basis, and the data are provided to Hartwig monthly. \u201cThis creates a continuous update,\u201d says Monkhorst. \u201cIt also immediately provides an option for quality control. If something in the data is incorrect, this approach gives us a feedback loop that allows us to quickly determine whether we selected the wrong source or need to adjust the query.\u201d<\/p>\n\n\n\n

A strong collaboration partner<\/h2>\n\n\n\n

Hartwig was eager to help bring this AvL initiative to life because of the special relationship between the two organizations. \u201cAvL is the hospital in the Netherlands where WGS is most deeply embedded in routine care,\u201d Roerink explains. \u201cThat makes AvL our largest collaboration partner. And what this project enables aligns perfectly with our philosophy: collecting data from today\u2019s patients to better inform tomorrow\u2019s patients.\u201d <\/p>\n\n\n\n

For Hartwig, the added value of DataNexus is that it provides highquality clinical data, Monkhorst says. \u201cFor us, the major benefit is that we can now share all our genomic data\u2014combined in a structured way with all clinical data\u2014with third parties, and use it ourselves for diagnostics, quality evaluation, validation, implementation of new tests, and research. We gain access to more and better data with strong justification. In diagnostics, we can use the raw data to answer the questions we need at that stage. It also accelerates the implementation of new tests. More broadly, it\u2019s valuable for care evaluation. Large datasets allow us to see whether subgroups of patients respond better\u2014or worse\u2014to certain treatments. All research made possible by this enriched data will ultimately contribute to better patient care.\u201d<\/p>\n\n\n\n

Next steps<\/h2>\n\n\n\n

With the introduction of DataNexus, AvL has taken an important step in datamanagement, but certainly not the last. \u201cWe still have several ambitions for the next phase,\u201d Monkhorst says. \u201cFirst, we<\/p>\n\n\n\n

want to use the database to rapidly improve data quality. Once we\u2019ve achieved that, we want to collaborate nationally. We\u2019re already in discussions with several university medical centers, because this model could be very useful for them as well.\u201d<\/p>\n","protected":false},"author":15,"featured_media":11051,"template":"","categories":[80],"class_list":["post-11056","blog","type-blog","status-publish","has-post-thumbnail","hentry","category-whole-genome-sequencing"],"acf":[],"yoast_head":"\nDataNexus connects clinical and genomic data - Hartwig Medical Foundation<\/title>\n<meta name=\"description\" content=\"DataNexus integrates clinical and genomic patient data to improve data quality, support research, and accelerate personalized cancer care.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.hartwigmedicalfoundation.nl\/en\/blog\/datanexus-connects-clinical-and-genomic-data\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"DataNexus connects clinical and genomic data - 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