Grant Call Summary

Living with Scleroderma or Raynaud’s can have a significant impact upon quality of life; and this is something that SRUK are well-aware of. Ongoing research towards developing new treatments and therapies has a cumulative effect in improving quality of life, but can the problem be addressed more directly?

The title of this call for grants is “Improving Quality of Life in Raynaud’s and Systemic Sclerosis” Applications were encouraged to focus on areas of our research strategy, which include early detection and diagnosis, precision medicine and potential treatments, with applicants having to consider how their proposal would drive improvements in quality of life, and how that could be measured through patient involvement throughout the project.

Five applications reached the second stage of the application process, and following a thorough peer review, the following proposals were granted full funding to bring them to fruition.

Project Title: Scleroderma in the Mouth: Improving Pathways to Care

• Lead Investigator: Professor Liz Walker
• Co-Investigators: Dr Liz Price (University of Hull), Dr Vishal Aggarwal (University of Leeds), Professor Francesco Del Galdo (University of Leeds)
• Lead Institution: University of Hull
• Amount Funded: £36,769.42
• Research Strategy Area: Quality of Life

Project summary:

Professor Walker and her team will develop a care pathway to improve oral and dental outcomes for people with scleroderma. Currently, there is a critical gap of knowledge, awareness, and coordination between rheumatology clinicians and dentists. The oral manifestations of scleroderma include a dry mouth, ulcers and disorders of the salivary glands. However, because not many dentists are aware of the condition, these complication may often go untreated, or end up being managed less effectively. This is something that Professor Walker hopes to improve.

The care pathway will be achieved by developing a set of clinical guidelines that will increase awareness among primary care dentists and promote early referral from rheumatology to special care dentistry. In developing these guidelines, individuals with scleroderma will be engaged in interviews, as part of an advisory group to better understand their experiences of dental problems.

Project Title: Self-Assessment of Skin Thickness in Systemic Sclerosis – Improving Quality of Life and Value of Telemedicine for Scleroderma by Empowering Patients

• Lead Investigator: Professor Christopher Denton
• Co-Investigators: Dr Julia Spierings (Royal Free Hospital), Dr Voon Ong (Royal Free Hospital), Professor Ariane Herrick (Royal Hospital Manchester), Professor Francesco Del Galdo (University of Leeds), Dr John Pauling (Royal National Hospital for Rheumatic Diseases)
• Lead Institution: Royal Free Hospital
• Amount Funded: £19,000
• Research Strategy Area: Quality of Life

Project summary:

Evaluating skin involvement in scleroderma is central to patient care. Understanding how scleroderma will progress or how a person is responding to treatments relies on taking accurate and reliable skin measurements. Pre-COVID, the modified Rodnan Skin Score was used routinely, however the focus on remote medicine during the pandemic has led to the creation of the PASTUL Questionnaire (Patient Self-Assessment of Skin Thickness in Upper Limb), that allows patients to grade their own skin.

This research project seeks to refine the questionnaire, thus increasing its potential for use within future clinical trials. In addition, the impact of skin involvement on a person’s quality of life will be measured, using the PASTUL questionnaire as a measure of skin severity.