Participate in online survey

Sep 27, 2020 | Clinical trials, News, Survey

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Dear Friends,

FESCA is proud to support a very important project funded by the World Scleroderma Foundation and Scleroderma and Raynaud’s UK and we need your help to secure its success.

Clinical trials are the only way to find a cure for Scleroderma. However, 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.

For this reason, the researchers are moving away from measuring the efficacy of a new drug only on the amount of skin involvement and considering also other aspects of Scleroderma including lung function, and quality of life. One of the measures used for this purpose is called Combined Response Index in SSc or CRISS Score.

Dr Del Galdo, Dr Kahanna and Dr Furst are running a project to improve this score by asking patients with Diffuse Scleroderma how important are different aspects of their condition.

If you are a patient with diffuse Scleroderma, we need your help!

You will be asked to watch a video tutorial of 9 minutes on line and answer a survey on line which will last 20 minutes or so.

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

In the email simply state
1. that you qualify as been diagnosed with diffuse scleroderma and have been involved in some clinical trial at any time.
2. 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 voice of patients is crucial to shape research in the right direction and your help will help to find the right cure for Scleroderma.


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