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Contact the study team using the details below to take part. If there are no contact details below please ask your doctor in the first instance.
Christian
Hedrich
chedrich@liverpool.ac.uk
Eleanor
Taylor-Barr
Eleanor.taylor-barr@alderhey.nhs.uk
Systemic connective tissue disorders
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Systemic sclerosis (SSc) is a condition where an overactive immune system can cause inflammation, fibrosis (scar tissue) and blood vessel changes that cause symptoms in multiple parts of the body, impacting on patients’ lives. Children with SSc have told us they want a better understanding of why they have SSc, and better treatments. This study will increase our understanding of how to treat SSc across the world.
Treatments for SSc have only partially been successful in trials in adults and, so far, have not involved children with this condition. Often patients must try different treatments before finding the right one. Being able to choose the right treatment for the right patient would enable switching off the disease and improving symptoms more rapidly, reducing damage and long-term complications from the disease.
By analysing blood samples, we will look at the genetic code in people with this condition and investigate how important genes function in SSc. When we asked patients, they thought taking an extra blood sample along with routine bloods to do this study would be acceptable and of benefit to them and people like them with SSc. We will compare these findings with other information, such as how a patient is affected and which blood markers they have (antibodies against their own self), to find patterns which allow us to group patients who may be best treated with e.g., treatment A rather than B. These genetic studies may also help us to discover new treatments. We will work with our colleagues in the United States of America who have already identified certain genetic changes in children with SSc and collect samples on this rare condition from patients in the US, UK, The Netherland, Germany and Italy. Through working with our colleagues caring for adults, we can compare results from adults with SSc.
Start dates may differ between countries and research sites. The research team are responsible for keeping the information up-to-date.
The recruitment start and end dates are as follows:
Observational type: Clinical Laboratory Study;
You can take part if:
You may not be able to take part if:
- jSSc patients (over the age of 18) or adult onset SSc under the age of 18 for workstreams 2 and 3 (juvenile-onset SSc participants over the age of 18 will be eligible for workstream 1 – genetic profiling). - Patient declines to consent or in case of patient under 16 years legal guardians/patient decline to consent or assent
Below are the locations for where you can take part in the trial. Please note that not all sites may be open.
The study is sponsored by University of Liverpool and funded by ALDER HEY CHILDREN'S CHARITY; SCLERODERMA & RAYNAUD'S UK; BATH INSTITUTE FOR RHEUMATIC DISEASES; .
Your feedback is important to us. It will help us improve the quality of the study information on this site. Please answer both questions.
Read full details
for Trial ID: CPMS 55620
You can print or share the study information with your GP/healthcare provider or contact the research team directly.
