INTERNATIONAL HEALTH TERMINOLOGY STANDARDS DEVELOPMENT ORGANISATION

Their core work

IHTSDO (now operating as SNOMED International) is the international non-profit organization that develops, maintains, and distributes SNOMED CT — the world's most comprehensive clinical health terminology standard used in over 40 countries. In EU research projects, they contribute authoritative terminology infrastructure: ensuring that clinical concepts, drug names, and medical events are described using standardized, machine-readable codes that different health systems can exchange without ambiguity. Their practical contribution is bridging the gap between regulatory standards bodies (like EMA), national eHealth networks, and the technical data models needed for cross-border health data exchange. They are a standards authority, not a research institute — they bring globally recognized frameworks rather than conducting original scientific inquiry.

What they specialise in

How they've shifted over time

Their two projects span a tightly focused arc from pharmacovigilance tooling to comprehensive medicine standardisation. WEB-RADR 2 (2018) placed them in the mobile and citizen-facing pharmacovigilance space — improving how adverse drug reactions are reported and processed. UNICOM (2019) then moved upstream into the regulatory and data infrastructure layer: standardizing how medicines are identified at source using IDMP, so that downstream systems (pharmacovigilance, prescribing, cross-border records) all speak the same language. The trajectory is from application-level health data quality to foundational regulatory data standards — a deepening of their core mandate rather than a pivot.

They are moving toward the regulatory data infrastructure layer — IDMP compliance, EMA alignment, and cross-border drug databases — suggesting future collaborations will likely involve medicines regulation, electronic product information, and national eHealth implementation projects.

How they like to work

IHTSDO participates exclusively as a consortium partner — they have never held a coordinator role in H2020. They join large, multi-country consortia (48 partners across 20 countries), which reflects their position as a standards body invited in for their normative authority rather than their project management capacity. Working with them means accessing their standards library and terminology expertise as a specialist input, not expecting them to drive project delivery.

Their H2020 network spans 48 unique consortium partners across 20 countries, reflecting the international character of health standardisation work. Their partners likely include national health ministries, hospital networks, pharmaceutical companies, and regulatory agencies — the natural constituency for a global terminology standards body.

What sets them apart

IHTSDO is the only organization in the world that owns and governs SNOMED CT, giving them a monopoly position in clinical terminology standardisation that no university or research institute can replicate. For any EU health data project requiring semantic interoperability — cross-border records, pharmacovigilance, clinical trials, AI-ready health datasets — IHTSDO's involvement signals credibility with regulators and guarantees alignment with the international standard. A consortium that includes them gains direct access to the terminology governance body, not just a user of their standards.

Highlights from their portfolio

• UNICOM
  The largest and most recent project (2019–2024, EUR 256,250), UNICOM tackles the hard problem of making medicine identification unambiguous across EU borders using IDMP standards — directly relevant to EMA regulatory reform and the European Health Data Space agenda.
• WEB-RADR 2
  An IMI2 public-private partnership on mobile pharmacovigilance, demonstrating IHTSDO's ability to work in industry-consortium settings where pharmaceutical companies and regulators must agree on shared data definitions.