The ASSESS National Multi-center Prospective Cohort
The ASSESS study is a long-term research project in France that follows individuals with Primary Sjögren's Syndrome (pSS) over 20 years. Started in 2006, it aims to better understand how pSS affects people over time, particularly looking at other health issues that might develop, like various body system complications and lymphoma (a type of cancer). Around 400 patients were initially recruited and are being monitored annually. This study helps doctors learn more about the long-term journey of pSS and identify early signs of potential complications, which could lead to better ways to manage the condition in the future.
At a glance
What is this study about?
The ASSESS study is a long-running research project that focuses on Primary Sjögren's Syndrome (pSS). This condition can cause significant dryness, tiredness, and pain, and for some people, it can lead to other health problems affecting different parts of the body, like the skin, joints, lungs, kidneys, and nervous system, and even increase the risk of certain cancers, such as lymphoma. The main goal of this study is to track what happens to people with pSS over a long period – up to 20 years – to see how the condition changes and what other health issues might arise.
Doctors hope to learn what might predict who develops these complications, especially lymphoma. By carefully observing many patients over a long time, they can identify patterns and factors that might indicate a higher risk. This information is very valuable because, at the moment, there isn't a cure for pSS, and understanding its progression better could lead to improved ways to manage the condition and help people stay healthier.
This study doesn't involve any new medicines or treatments; instead, it's about carefully collecting information from people who already have pSS. By doing this, researchers can build a clearer picture of how the condition affects people's lives over the long term. The study started in 2006 in France, with about 400 patients initially signing up, and it continues to gather important information annually.
Key takeaways
- This study observes people with Primary Sjögren's Syndrome over 20 years.
- It helps doctors understand how the condition progresses and what other health issues might arise.
- Participants have annual health check-ins to record their symptoms and complications.
- No new treatments or medications are given as part of this study.
- The information collected could lead to better management of Sjögren's Syndrome in the future.
Who may be eligible?
To be part of this study, you must be an adult, aged 18 years or older. A key requirement is that you must have already participated in the original ASSESS study. This study is designed specifically for people who are already on the study journey.
Anyone who has `secondary` Sjögren's Syndrome will not be able to join. Secondary Sjögren's means your Sjögren's is linked to another autoimmune condition, like lupus or rheumatoid arthritis. This study is only for people with `primary` Sjögren's Syndrome, meaning it's not caused by another existing autoimmune disease.
So, if you are an adult, previously took part in the ASSESS study, and have Primary Sjögren's Syndrome, you might be eligible.
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 Primary Sjögren's Syndrome?
- Have you previously participated in the original ASSESS study?
- Do you *not* have Sjögren's Syndrome linked to another autoimmune disease?
What does participation involve?
If you are eligible, taking part in this study means you will be followed by doctors annually for a period of 20 years. During your annual visits, a healthcare professional will thoroughly complete a standardised form with information about your health. This involves documenting any current or past health issues, particularly those related to your Sjögren's Syndrome, such as problems with your skin, joints, lungs, kidneys, or nervous system, as well as any history of lymphoma. You won't be given any new medications or treatments as part of this study; it's purely about observing and recording your health journey over time. The information gathered will help doctors understand how Primary Sjögren's Syndrome changes over many years. The total time you would be involved in the study is 20 years.
Potential risks and benefits
Locations (1)
- Hopital BicêtreVerified postcodeLe Kremlin-Bicêtre, France· Recruiting
Common questions
What is Primary Sjögren's Syndrome?
It's a long-term illness that causes dryness, tiredness, and pain, and can affect different parts of the body.
What is the main goal of this study?
To understand how Primary Sjögren's Syndrome changes over 20 years and predict potential health problems like lymphoma.
Will I be given any new medication?
No, this study doesn't test new medicines; it's about observing your health over time.
How long will I be in the study?
The study aims to follow participants for 20 years with annual check-ups.
Can I leave the study if I change my mind?
Yes, you can withdraw from the study at any time without it affecting your medical care.
How to find out more
Xavier Mariette
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
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