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

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.

Our research community needs you! 

Do you have diffuse cutaneous systemic sclerosis (dcSSc)? 

Would you like to contribute to an exciting international research project that could help improve clinical trials from the comfort of your home?

An international team of clinicians and researchers jointly funded by SRUK and WSF are leading a project to improve outcome measures for diffuse cutaneous systemic sclerosis; these are measures studied during a clinical trial to inform clinicians whether the treatment tested works. 

Clinical trials are the only way we will find better treatments for Scleroderma. It is sometimes very hard to judge if a new drug tested in a clinical trial is effective and how much it is actually helping patients. This is particularly true in Scleroderma, which can affect very different aspects of patients' lives.

The modified Rodnan skin score (mRSS) is a 'gold standard' outcome measure for clinical trials in patients with dcSSC. However, dsSSC affects many areas of the body, in accordance with this, researchers would like to consider the effects that treatments have on these non-skin, aspects of Scleroderma such as lung function, and quality of life. One of the measures currently used for this purpose is called the Combined Response Index in SSc or CRISS Score.

Dr Del Galdo, University of Leeds, is working alongside US based colleagues, Drs Khanna and Furst, University of Michigan, on an exciting project to improve the CRISS score to make it more representative of the patient experience. They are looking for patients with dsSSc to share with them the relative importance of different aspects of their condition. 

How can I help?

You can contribute to this study from the comfort of your own home, it should take no more than 30 minutes of your time to share your views. Participants will need to watch a 9 minute video clip to give you the necessary information about the study and survey. After this you will be asked to complete an on-line survey which will take about 20 minutes. 

If you are interested in participating simply send an email to sscoutcomemeasure@gmail.com

Please provide the following information for the study team:

  • that you have been diagnosed with diffuse scleroderma, 
  • please indicate if you have prior experience of clinical trials, although this is not a pre-requisite for this study
  • if you want or do not want to be notified on the results of the project by email

You will be sent a link to participate to the survey anonymously in reply to your email. The survey will be open until 31st October.

This project is jointly funded by SRUK and the World Scleroderma Foundation