From Infrastructure to Impact: genomDE and GHGA at the GfH Annual Meeting

Collage of pictures taken at the GHGA workshop at the GfH Annual Meeting 2026, showing the full room of participants as well as the different speaker.

At the Annual Meeting of the German Society of Human Genetics in Munich, the workshop “10,000 Genomes and Counting” offered more than 200 participants an in-depth look at the progress of the genomDE Model Project and the integration of the Genome Data Centers (GRZs) with GHGA.

The session brought together representatives from across the genomDE network, highlighting how the initiative is building a coordinated national infrastructure for genomic medicine. At its core, genomDE seeks to integrate genome sequencing into routine clinical care for patients with rare diseases and cancer, while ensuring that the resulting data can be securely archived and made available for research.

Andreas Till (BfArM) opened with an overview of the project’s current status and trajectory towards sequencing 100,000 patients and its platform architecture. Christian Mertes (TUM & TUM Klinikum) then outlined how genomic data flows through the Genome Data Centres (GRZ) and how integration with GHGA is being developed to support long-term, FAIR-compliant data archiving and reuse.

Anna Lübbe (RKI) focused on governance aspects, describing how data flows are managed from the patient consent process to secure transmission. She also explained how the trust centre ensures a balance between accessibility for care and research and robust privacy protection. Complementing these perspectives, Malte Spielmann (Charité) presented clinical examples demonstrating the impact of genomDE. He showed cases where genome sequencing resolved long-standing diagnostic challenges and informed treatment decisions. His examples illustrated the project’s transition from infrastructure development towards knowledge-generating clinical care.

With more than 10,000 genomes already processed, the genomDE Model Project has established a comprehensive, decentralised infrastructure. This includes six Genome Data Centres as well as Clinical Data Nodes at university hospitals, and a dedicated trust centre. Within this ecosystem, GHGA wants to play a key role by archiving genomic data and, where consent is provided, enabling its reuse for research. In doing so, it will help to bridge the gap between routine clinical sequencing and the broader scientific community.

The workshop underscored the importance of coordinated national efforts in advancing genomic medicine. It demonstrated how integrated infrastructures like genomDE and GHGA can support both patient care and research in a sustainable and secure way.