Cohort of Patients With Systemic Sclerosis Within the Framework of the RESO Reference Centre
This study aims to understand systemic sclerosis, also known as scleroderma, which is a rare condition that affects the skin and internal organs. There isn't a cure for it yet, partly because we don't fully understand how it develops. This research brings together information and samples from patients to track how the disease progresses over five years. By gathering reliable blood and tissue samples and detailed patient information, scientists hope to learn more about scleroderma's causes and how it affects people. This knowledge is crucial for developing new and effective treatments in the future for those living with this condition.
At a glance
What is this study about?
Scleroderma, also known as systemic sclerosis, is a rare illness that affects the body's connective tissues. These tissues are found throughout your body and provide support for skin, blood vessels, and internal organs. In scleroderma, the body makes too much collagen, which can lead to hardened skin, blood vessel problems, and damage to organs like the lungs or kidneys. It can be a very challenging condition, and currently, there's no treatment that can stop its progression.
One of the main reasons there isn't a cure is that scientists don't yet fully understand exactly why and how scleroderma develops. This study aims to fill in some of these knowledge gaps. Researchers hope to build a detailed picture of how the disease progresses in individuals over five years. To do this, they will collect detailed medical information and biological samples, like blood and small tissue pieces, from people with scleroderma.
By carefully studying these samples and tracking changes over time, scientists can gain new insights into the disease. This deeper understanding is absolutely vital for developing new and more effective treatments in the future. The project builds on previous research, aiming to strengthen our knowledge and improve the lives of people affected by scleroderma.
Key takeaways
- This study helps scientists better understand scleroderma, a rare condition.
- It aims to track how the disease changes in patients over five years.
- Information and samples (blood, tissues) are collected to aid research.
- There is no direct personal benefit, but findings could lead to future treatments.
- Participation involves several visits for sample collection over 5 years.
- You can stop participating at any time.
Who may be eligible?
To be able to take part in this study, you must be 18 years old or older. You will either have a diagnosis of systemic scleroderma based on specific medical guidelines, or you might have what doctors call "very early systemic sclerosis." This early form is identified if you experience Raynaud's phenomenon (where your fingers and toes change colour, often due to cold or stress) and have certain antibodies in your blood.
You also need to be part of a social security scheme, which is standard in the UK and means you have access to healthcare services. Before joining, you will need to give your free and informed consent in writing, after being fully told about what the study involves.
However, some people cannot join the study. If you are pregnant or breastfeeding, you won't be able to participate. Also, if you are under a legal guardianship or similar protection, you wouldn't be able to take part.
Could this study suit you?
Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.
- Are you 18 years old or older?
- Do you have systemic scleroderma or very early signs like Raynaud's and specific blood markers?
- Are you part of a social security scheme (e.g., NHS in the UK)?
- Are you able to give written consent to take part?
- Are you pregnant or breastfeeding? (If yes, you can't join)
- Are you under legal guardianship? (If yes, you can't join)
What does participation involve?
If you decide to take part in this study, it would involve follow-up over a period of five years. During this time, the researchers will collect various samples. This includes taking blood samples from you. In some cases, a small tissue sample (biopsy) might be taken, which involves removing a tiny piece of skin or other tissue. You might also have bronchoalveolar samples taken; this procedure (called a bronchoalveolar lavage) involves putting a thin tube into your lungs to collect fluid. These procedures happen at different times over the five years, and the study team will explain the exact schedule and what each visit involves before you agree to participate. You will not be given any new medication as part of this study.
Potential risks and benefits
Locations (1)
- CHU de Bordeaux - service de rhumatologieVerified postcodeBordeaux, France· Recruiting
Common questions
What is systemic sclerosis?
It's a rare condition where your body makes too much collagen, affecting your skin, blood vessels, and internal organs. It's also known as scleroderma.
Why is this study important?
Because we don't fully understand scleroderma, there's no cure. This study aims to learn more about how it progresses to help find new treatments in the future.
What kind of samples will be collected?
Researchers will take blood samples, and sometimes small tissue samples (biopsies) or samples from your lungs (bronchoalveolar samples).
How long will I be in the study?
The study will follow patients for five years to see how the disease changes over time.
Will I receive new medication in this study?
No, this study focuses on understanding the disease progression and collecting samples, not on testing new medications.
How to find out more
Marie-Elise TRUCHETET, MD, PhD
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
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