About the collaborative

Mission & vision

Standardise the description of TOS, then improve its treatment.

Thoracic outlet syndrome sits between specialties. A patient may be seen by a vascular surgeon, a thoracic surgeon, a neurologist, a physiotherapist or a pain clinic, and each discipline records the condition in its own language. The result is a literature made largely of single-center series that cannot be pooled.

The collaborative was founded to remove that obstacle. Our first task is a shared vocabulary: agreed subtype definitions, an agreed minimum dataset, and agreed outcome measures. Our second is to use that vocabulary — through a shared registry and multicenter studies — to answer the questions individual centers cannot answer alone.

Objectives

• Publish consensus definitions and reporting standards for neurogenic, venous and arterial TOS.
• Maintain an international, de-identified registry with a common minimum dataset.
• Support multicenter studies with protocols, case report forms and statistical advice.
• Provide structured education for clinicians entering the field.
• Give patients accurate, readable information and a way to find an experienced center.
• Represent TOS in the wider surgical, neurological and rehabilitation communities.