EUROlinkCAT (2017-2022) specifically focused on linking EUROCAT registry data with hospital discharge, prescription, and mortality records for children with birth defects.
KLINIKA ZA DJECJE BOLESTI ZAGREB
Croatian children's hospital contributing EUROCAT-linked clinical data on congenital anomalies and rare diseases to European research consortia.
Their core work
Klinika za dječje bolesti Zagreb is a specialist children's hospital in Croatia that combines clinical pediatric care with research on congenital anomalies and rare diseases. In H2020, they contributed as a clinical data partner — providing access to hospital discharge records, prescription data, and patient cohort information linked to the pan-European EUROCAT registry. Their research role is that of a data contributor and clinical site within large multinational consortia studying birth defects, childhood morbidity, and rare disease epidemiology across Europe.
What they specialise in
EUROlinkCAT keywords include hospital discharge data, length of stay, and prescription records, indicating the clinic contributed real-world patient data from routine clinical practice.
EJP RD (2019-2024) involvement signals expansion into the broader rare disease space, with emphasis on FAIR data principles, omics integration, and patient-centred approaches.
EUROlinkCAT keywords include parent empowerment, e-forum, and social media, suggesting the clinic contributed to patient-facing education and community engagement components.
How they've shifted over time
Their first H2020 engagement (2017) was firmly in congenital anomaly epidemiology — data linkage, mortality tracking, morbidity surveillance, and EUROCAT registry infrastructure. By 2019, their focus expanded toward the wider rare disease landscape, with keywords shifting to FAIR data, omics, shared access, and innovative clinical study methodologies, reflecting a move from purely registry-based work to more data-sharing and translational ambitions. The trajectory suggests a deliberate broadening from one specific condition group (birth defects) toward the infrastructure and policy dimension of rare disease research more generally.
The clinic is moving from narrow epidemiological data contribution toward broader rare disease research ecosystems, including data sharing standards and translational partnerships — making them an increasingly relevant node for consortia working at the clinical-data infrastructure interface.
How they like to work
This organisation has never led an H2020 project; it participates as a clinical data partner or third party, providing patient cohort access rather than scientific coordination. Both projects were large consortia — EUROlinkCAT had 168 unique partners across 35 countries — indicating comfort operating within complex multinational structures without a central role. For a consortium builder, they are a reliable specialist node: they bring clinical credibility and patient data from Croatia, but will not drive project management or administration.
Despite only two projects, the clinic has accumulated contact with 168 unique consortium partners across 35 countries — almost entirely through EUROlinkCAT's pan-European registry network. Their network is broad but concentrated in the health research and rare disease communities.
What sets them apart
As one of the few Croatian clinical institutions active in European congenital anomaly and rare disease research, they offer something rare in consortia: a certified EUROCAT registry site with access to linked administrative health data from a Central and Eastern European country. For studies requiring geographic diversity or data from the Western Balkans region, they fill a gap that most Western European partners cannot. Their dual footprint in both birth defect surveillance and emerging rare disease frameworks makes them a versatile clinical partner for health research projects requiring multi-country patient data.
Highlights from their portfolio
- EUROlinkCATThe clinic's primary funded project, linking EUROCAT congenital anomaly registries with administrative health data across Europe — one of the most comprehensive birth defect cohort studies in H2020, with 168 consortium partners.
- EJP RDParticipation in the European Joint Programme on Rare Diseases as a third party signals recognition by a flagship EU rare disease initiative, even without direct EC funding allocation to the clinic.