The Dutch National Cancer Data Node (NCDN-NL) brought together more than 40 experts from across the oncology, data, policy and innovation ecosystem for a full-day meeting dedicated to shaping the future of cancer data infrastructure in the Netherlands. The Dutch Node is one of the NCDNs CANLDE helps to establish. Senior representatives from Health-RI, IKNL, NKI, Princess Máxima Center, TNO, Zorginstituut Nederland (ZIN), the Dutch Cancer Collective (NKC), KWF and other national programmes delivered presentations and discussions that collectively outline the Netherlands’ path toward an interoperable, FAIR, secure and scalable cancer data ecosystem aligned with the blueprint of European Health Data Space (EHDS) digital capabilities.
Highlights from the Event
1. Strong national alignment on EHDS implementation
Speakers Gerrit Meijer and Mattijs Sloep outlined Dutch contributions to TEHDAS2, EHDS implementing acts and cross-border collaboration strategies. The Netherlands is proactively shaping European guidelines while building the national Health Data Access Body (HDAB-NL).
2. Major progress on national oncology data infrastructures
- Sarah van Drumpt and Erik Cornelisse (TNO) introduced progress on the HERACLES privacy-preserving dataspace, aligned with EHDS.
- Adria Closa Mosquera and Mariska Bierkens (NKI/Health-RI) presented cBioPortal as a national engine for structured translational research data.
- Reinier Morra, Julie Kurps and Mattijs Sloep highlighted the FAIR Package Registry, enabling machine-readable reimbursement decisions.
- Nadia Bieree and Marianne Knoop shared updates on the HDAB-NL MVPs, including DAAMS and the national catalogue.
3. Accelerating national oncology data standardisation
Princess Máxima Center experts Patrick Kemmeren, Rinke Riezebos and Hinri Kerstens introduced the Common Interoperability Model (CIM) and OncoBeacon, providing national-standard data structures and federated genomic discovery tools.
4. Real-world data for better care
IKNL’s Kailesh Bansi and Marloes de Jong presented OPTIMISM, a national system for real-time symptom monitoring in palliative oncology.
5. Dutch Cancer Collective advances the national cancer agenda
Femke Jacobs, Tilja van den Berg, and Warnyta Minnaard led a workshop focused on creating a learning health system for oncology diagnostics, mapping national initiatives and identifying opportunities to accelerate personalised diagnosis.
6. Vision-setting panel on the future of cancer data in NL
A panel including Carla van Laer, Joppe Tra, Patrick Kemmeren, Joep de Ligt, Carla Pieterman, Anika Bongaarts, Eva Meize and Lifang Liu outlined shared priorities for strengthening national coordination, increasing EHDS readiness and aligning initiatives across Dutch oncology.
A unified call to action
Across all presentations, one message echoed strongly: collaboration is essential. NCDN-NL will continue to serve as the national coordination point to connect initiatives, reduce fragmentation and accelerate the responsible reuse of cancer data.
“NCDN-NL is a community for all of us. Come, share and collaborate. Together we can maximize the benefits of national and international expertise and seize the opportunities the EHDS offers.”
| NCDN-NL Strategy | ||
| 1 | Being the focal point for patients, cancer data users, data holders and (developers of) data infrastructures to receive guidance on standards, existing tools and infrastructures, and to make domain decisions regarding oncology specific secondary data use to reduce the burden of cancer. | |
| 2 | Share strategy, build, scale up and implement components needed for cancer data to maximize the impact of EHDS national implementation along the functions described in the EHDS blueprint of digital capabilities | |
| 3 | Maximize the visibility, funding opportunities and (inter)national collaboration and realize international ambition | |
| Action Plan 2026 | Topics | |
| Co-develop/co-create | 1 | Use cases arising from the Dutch Cancer Collective acceleration teams on the featured goals |
| 2 | Maximize availability of cancer data for secondary use | |
| 3 | Strategy for sustainability of national cancer data infrastructures and smart positioning both nationally andinternationally | |
| Create an NCDN-NL function window showby scaling up best practices, with international experts inputs/EU funding opportunities | 4 | cBioportal further development to bridge the primary and secondary use of cancer data |
| 5 | Data linkage, with involvement of generic data infrastructures | |
| 6 | Common data model, NL | |
| 7 | Federated querying and federated analysis (e.g. Onco-beacon) | |
| 8 | Participate to and monitor the results of EHDS blueprint implementation while capitaizing the momentum of ongoing projects e.g. CANDLE, JA-PCM, EUnetCCC and more) |
Download the slides of the meeting here!
About NCDN-NL
The Dutch National Cancer Data Node (NCDN-NL) is the national community and coordination hub for oncology data in the Netherlands. Its mission is to build a coherent, interoperable data ecosystem supporting research, innovation, clinical care and policymaking—aligned with the blueprint of European Health Data Space (EHDS) digital capabilities.
NCND-NL and CANDLE
NCDN-NL/Health-RI coordinates the EU-funded CANDLE project ( European Union’s Horizon Europe programme, project number 101214368).
