Seven papers from one chronic rhinosinusitis registry

CHRINOSOR — the Chronic Rhinosinusitis Outcome Registry — is an international outcome registry built on patient-facing technology, governed by a consortium of clinical leaders across Europe. Since its establishment it has produced seven peer-reviewed publications.

What the papers cover

Three address real-world effectiveness of biologics in chronic rhinosinusitis with nasal polyps: dupilumab in a European cohort, mepolizumab, and omalizumab. Two examine whether patients treated in routine practice actually meet the indication criteria set out in international recommendations — a question that matters to payers as much as to clinicians. One characterizes patients by markers of type 2 inflammation. The first describes how the registry itself was established.

Why a registry publishes at all

Registries are often built to answer one sponsor's question and then stop. The clinical leaders who contribute the patients get access to a dataset and, if they are fortunate, an acknowledgement.

That is a poor bargain for the people whose participation the registry depends on, and it shows up as slow recruitment and thin engagement. A registry designed around a publication pipeline changes the terms: the investigators are investigators and co-authors, the scientific questions are set by a steering committee rather than by a single sponsor, and the output is in the literature where it can be cited.

It also produces better evidence. A dataset that has survived peer review several times is a different asset in a reimbursement conversation from one that has never been examined outside the company that paid for it.

The model

CHRINOSOR runs on a federated architecture: each hospital keeps control of its own data, combined through a trusted third party framework. The same model underpins BRONCHISOR in COPD.

The seven papers are listed below.