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Patient organisation-led initiatives can play an important role in raising awareness about Raynaud’s phenomenon and encourage earlier healthcare utilisation for high-risk groups
  1. Michael Hughes1,2,
  2. Amy Baker3,
  3. Sue Farrington3,
  4. John D Pauling4,5
  1. 1 Department of Rheumatology, Royal Hallamshire Hospital, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK
  2. 2 Centre for Musculoskeletal Research, The University of Manchester, Salford Royal NHS Foundation Trust, Manchester Academic Health Science Centre, Manchester, UK
  3. 3 Scleroderma and Raynaud’s UK, London, UK
  4. 4 Royal National Hospital for Rheumatic Diseases (at Royal United Hospitals), Bath, UK
  5. 5 Department of Pharmacy and Pharmacology, University of Bath, Bath, UK
  1. Correspondence to Dr John D Pauling, Royal National Hospital for Rheumatic Diseases, Bath, BA1 1RL, UK; johnpauling{at}

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Raynaud’s phenomenon (RP) manifests as episodic vasospasm of the extremities (hands and feet) in response to cold exposure. RP can be primary (idiopathic) or secondary to underlying disease such as systemic sclerosis (SSc). Attacks of RP are often associated with digital colour changes reflecting local tissue perfusion and oxygenation. RP results in pain, numbness, impaired function and reduced quality of life.1 2 The obliterative vasculopathy of SSc can result in digital ulceration. Diagnostic delay of secondary RP remains a major unmet need. The time between the onset of RP and emergence of the first non-RP symptom can be over 5 years.3 This contributes to delay in diagnosis; with >25% of women not diagnosed with SSc for 10 years after the emergence of RP.4

Against this background, Scleroderma Raynaud’s UK (SRUK) led an initiative to devise …

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  • Handling editor Josef S Smolen

  • Contributors All authors were involved in the planning, conduct and reporting of the work described in the article.

  • Funding This study was funded by Scleroderma and Raynaud’s UK.

  • Competing interests None declared.

  • Patient consent Not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.