Diagnosis, Determining Factors, and Characteristics of Pathologies Associated With Autoinflammatory Diseases.
This research study is focusing on rare autoinflammatory diseases. These are conditions where your body's immune system mistakenly attacks itself, leading to regular bouts of fever, rashes, and joint pain. These attacks happen even when there's no infection. The study aims to discover how to diagnose these diseases more quickly, understand what triggers them, and which treatments are most effective. It's open to both children and adults who have been diagnosed with a rare autoinflammatory disease and are receiving care at the Hospices Civils de Lyon.
At a glance
What is this study about?
You might be familiar with your immune system as your body's defence against germs. In autoinflammatory diseases, this defence system becomes overactive or confused, causing swelling and inflammation even when there's no real threat. This can lead to repeated episodes of symptoms like fevers, skin rashes, or joint pain. Sometimes, you might also experience tummy aches, mouth ulcers, or swollen glands. These conditions are considered rare and often have a genetic link, meaning they can run in families.
Currently, diagnosing these diseases can be a long process, relying on clues from your symptoms, blood tests, and sometimes genetic tests. Treatment often involves specialised medicines that might only be available in hospitals. This study, led by doctors and researchers, wants to improve how we understand and manage these conditions.
The main goals of this national study are threefold: firstly, to find new ways to diagnose autoinflammatory diseases more quickly; secondly, to understand what factors lead to these diseases and what their common features are; and thirdly, to evaluate which treatments are currently being used and how well they are working for patients. By gathering this information, the researchers hope to make a real difference for people living with these often challenging conditions.
Key takeaways
- This study focuses on rare autoinflammatory diseases.
- It aims to improve diagnosis, understand causes, and assess treatment effectiveness.
- Participation involves sharing information from your existing medical care.
- Both children (aged 4.5-18) and adults (18+) can join.
- You must be treated at Hospices Civils de Lyon to be eligible.
- Your participation could help future patients with similar conditions.
Who may be eligible?
To take part in this study, you need to have been diagnosed with a rare autoinflammatory disease. The study is open to both children and adults.
For adults, you must be 18 years old or older. For children, you need to be at least 4 years and 6 months old, up to 18 years.
It's also important that you are receiving your care for this condition at the Hospices Civils de Lyon and are registered with social security in France. There are no other reasons that would prevent you from joining if you meet these criteria.
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.
- I have been diagnosed with a rare autoinflammatory disease.
- I am aged between 4 and a half and 18 years old, or I am 18 years or older.
- I receive my medical care at the Hospices Civils de Lyon.
- I am registered with social security in France.
What does participation involve?
The study does not specify particular visits, assessments, or medication directly related to the research. It is a observational study, which means researchers are mainly gathering information about what is already happening in patient care. This includes looking at how you are diagnosed, the specific features of your condition, and the treatments you are currently receiving. It's likely that your usual appointments and treatments for your autoinflammatory disease will provide the necessary information for the study. The total duration of your participation is not clarified in the study brief, but it generally involves collecting data over time. You should discuss the exact details with your study doctor.
Potential risks and benefits
Locations (1)
- Hôpital de la Croix-Rousse - Service de médecine interne - 103 Grande Rue de la Croix-RousseVerified postcodeLyon, France· Recruiting
Common questions
What is an autoinflammatory disease?
It's a condition where your body's immune system mistakenly causes swelling and inflammation, leading to repeated episodes of fever, rashes, and joint pain, even when there's no infection.
What is the main goal of this study?
The study aims to find quicker ways to diagnose these diseases, understand their causes, and see which treatments work best for patients.
Will I receive new treatment in this study?
No, this study is observational, meaning researchers will gather information about your existing diagnosis, symptoms, and treatments, rather than providing new ones.
Who can take part in this study?
Adults over 18 and children aged 4 and a half to 18 who have a rare autoinflammatory disease and are treated at Hospices Civils de Lyon. You also need to be registered with social security.
What information will the study collect about me?
The study will look at details about your diagnosis, the specific features of your condition, and the treatments you are currently receiving.
How to find out more
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
Discussion
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