SRUK’s co-funded project with World Scleroderma Foundation seeking to improve the Combined Response Index in SSc Score.

Date: Wed 2nd September 2020

You may have seen posts on our social media and e-news encouraging members of our community living with diffuse cutaneous systemic sclerosis (dcSSc) to register for a survey. An important part of participating in a project such as this is ensuring that you understand how the collected data will be used and why community input is so valuable and fundamentally vital. We have therefore written the article below to further expand on the basis of this study.

dcSSc can represent a severe prognosis for an individual, chiefly because it is a complex condition that may affect multiple conditions, and it can occur to varying degrees and affect organs in different ways in one person to the next. For this reason, it is necessary to have tools which can display if dcSSc is progressing in an individual, and if the treatment is helping to slow this down. There is argument that the modified Rodnan skin score (mRSS) does not sufficiently convey how a person living with dcSSc feels and functions over a given period of time, hence an international group of experts, including Dr Khanna, Dr Furst and Dr Del Galdo, are seeking to improve the utility of the Combined Response Index in SSc (CRISS) score. This score combines a number of disease measures into one single outcome and has been shown to be of more use than the mRSS alone.

Although the CRISS is an important tool in the care of a person affected by dcSSC, further improvements may prove beneficial. This is particularly in regard to adapting the CRISS score to measure how much dcSSc is improving or worsening in someone receiving treatment, and what kind of clinical change is needed to have an impact on a person's life. The aim of this project, therefore, is to improve the clinical interpretation of the CRISS score to improve outcomes of those receiving treatment for dcSSc.

For this reason, patient involvement is crucial to ensure success of this investigation. If you are living with dcSSc and are interested in taking part, then please email sscoutcomemeasure@gmail.com, stating that you qualify as being diagnosed with dcSSc, as well as if you would like to be notified of the results at the end of the project. You will then be asked to watch a video tutorial of 9 minutes and sent a link to participate in a survey anonymously (the survey takes approximately 20 minutes). If you would like any further information about the project, please do not hesitate to get in touch with us at info@sruk.co.uk and we will endeavour to help you.