Orofacial Working Group

Summary of Current Projects:

• “A multinational survey concerning the oral health needs of patients with systemic sclerosis”
• “A multi-national survey to identify clinicians’ perspectives concerning the oral health needs of patients with systemic sclerosis”
• “A retrospective survey of patients systemic sclerosis referred to specialist dental services”
• “Lips In Health and in Systemic Sclerosis: Relevant Physiology, Pathogenesis, Existing Therapeutic Approaches, and Unmet Needs” (Review article)
• “Development of a Provisional Core Outcome Set for the Assessment of Orofacial Interventions in Systemic Sclerosis: An initiative from the SCTC Orofacial Working Group”

Progress to date:

• Patient survey (‘Significant unmet needs and treatment preferences concerning patient’s orofacial needs in systemic sclerosis: Results from a large international survey’) submitted to SSc26 World Congress, manuscript in progress
• Clinician survey – complete, >100 responses. Analysis and manuscript preparation ongoing.
• Lips review article, manuscript revision invited by JSRD.
• Assembled broader international, cross-disciplinary working group members (>60).
• Hold first Orofacial in SSc Working Group meeting (hybrid) at ACR25.
• Launch Provisional Core Orofacial in SSc Outcome Set initiative at ACR25.
• Recruited Dr Eleni Deligianni (NIHR Academic Clinical Lecturer in Oral Medicine), The University of Manchester – key role as junior faculty in the Working Group.

Next steps:

• Publish Patient and Clinician Surveys
• Launch Provisional Core Outcome Set initiative (Q4 2025/Q1 2026)
• Apply for Working Group funding next year from SCTC (Working Group Grant or BB).
• Develop observational studies of Orofacial in SSc.

What are expected deliverables and timelines for grant/working group?

• Publish Patient and Clinician Surveys (Q4 2025/Q1 2026)
• Publish Lips in SSc review (Q4 2025/Q1 2026)
• Launch Provisional Core Outcome Set initiative (Q4 2025/Q1 2026) – completion Q2 2026.
• Develop novel imaging approaches to Orofacial involvement in SSc (Dr Andrea Murray, The University of Manchester, Others) (2026, onward).
• Develop observational studies of Orofacial in SSc (2026, onward).

Contact information for how members can get involved:

• Dr. Michael Hughes (Michael.hughes-6@manchester.ac.uk)
• Dr. Zsuzsanna McMahan (zsuzsanna.h.mcmahan@uth.tmc.edu)
• Dr Lee Shapiro (leeshapiromd@gmail.com)