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TOS Registry

An international, de-identified registry of thoracic outlet syndrome cases, built on a common minimum dataset so that centers can be compared with one another.

1,240

Records submitted

Participating centers

Countries

Publications

Summary statistics

What the registry currently contains

All figures below are aggregated and anonymised. No identifiable patient information is stored on this platform at any point.

Cases by subtype

Subtype	Records	Share	Centers
Neurogenic	1,046	84.4%	38
Venous	151	12.2%	29
Arterial	43	3.4%	17

Primary management recorded

Management	Records	12-month follow-up available
Conservative / physiotherapy only	602	71%
Surgical decompression	494	83%
Thrombolysis followed by decompression	98	88%
Arterial reconstruction	46	91%

The minimum dataset

Each record covers presentation, provocative findings, imaging, electrodiagnostics, treatment, complications and outcome at fixed intervals. The field set was agreed with the collaborative and can be extended by administrators as the dataset evolves.

How privacy is protected

The submission form never collects patient names, national or hospital ID numbers, or exact dates of birth. It records year of birth or age at diagnosis. Each center assigns its own local case code, and the key linking that code to a patient stays at the center.

Contributing to the registry

Submission is open to members with a confirmed affiliation to a listed center. Submissions are timestamped and linked to the submitting center, and administrators can request corrections.

List your center

Publications arising from the registry

Title	Journal	Year	Subtype
Variation in the diagnostic criteria used for neurogenic TOS across 38 centers	Journal name	2026	Neurogenic
Presentation and management of effort thrombosis: an international cohort	Journal name	2026	Venous
Cervical rib morphology and arterial complications	Journal name	2025	Arterial
A core outcome set for thoracic outlet syndrome	Journal name	2025	All