03 October 2023


In the midst of updating the systemic sclerosis (SSc) guideline, we conversed with the Guideline Working Group (GWG) to unveil their progress and offer a glimpse into the forthcoming publication.

Following the publication of the guideline update scope in March 2023, the GWG has been conducting a thorough systematic literature review to identify all relevant evidence published since the original guideline.

Led by rheumatology fellows, Elen Roblin and Enrico De Lorenzis, the evidence extracted from the papers that were identified was presented to the GWG to support the development of clinical practice recommendations.

Chair of the GWG, Professor Christopher Denton, said:

“Our group discussions have enabled us to review the most up-to-date evidence and combine this with the experience of our multi-professional expert members, and members with lived experience of SSc, in order to draft recommendations to support the best possible care of people with SSc.”

Sue Farrington, Chief Executive of Scleroderma & Raynaud's UK (SRUK), and one of the patient representative members in the GWG, said:

“I have been delighted to be part of the group developing this updated guidance. There have been a number of important new trials and evidence-based therapies for the treatment of SSc since the previous treatment guideline, so this update will provide a vital resource for health professionals to utilise in consultation with their patients.”

The GWG reviewed evidence to answer questions across a wide range of topics including

  • Consideration of autologous haematopoietic stem cell transplantation
  • Cardiopulmonary complications
  • Digital vasculopathy
  • Gastrointestinal tract disease
  • Renal complications
  • Skin complications
  • Neurological complications
  • Musculoskeletal disease, fatigue, and quality of life

The full guideline will be accompanied by an audit tool to assess service delivery and to be able to undertake a patient-specific audit.

The updated guideline is expected to be published around the middle of 2024.

All our guidelines are published in Rheumatology  under an ‘open access’ license and available for free via our guidelines page on our website.

NICE accredits our clinical guideline process; this is valid until December 2023.