Biocollection of Patients With ANCA Associated Vasculitis
This study is gathering important information and samples, like blood, urine, and stool, from patients living with a rare immune condition called ANCA-associated vasculitis. Because this disease is uncommon, scientists don't yet fully understand why it happens or how it progresses in everyone. By carefully collecting and studying these samples over several years, alongside health questionnaires, researchers hope to learn more about the condition's characteristics. A key goal is to find ways to predict if someone is likely to have a flare-up of their disease. They also want to identify factors that might predict other serious issues like infections or heart problems. This knowledge will help doctors create more tailored and effective treatment plans for people with ANCA-associated vasculitis.
At a glance
What is this study about?
ANCA-associated vasculitis is a rare but serious condition where your body's immune system mistakenly attacks its own blood vessels. This can cause inflammation and damage throughout the body. While treatments like steroids and other medications have greatly improved outcomes, it's still a challenging disease, and many people experience flare-ups. We also know that the treatments themselves can have side effects.
Because this disease is rare, there isn't a lot of information available on how it affects different people over time. This study aims to create a comprehensive collection of information and samples from patients with ANCA-associated vasculitis. Researchers will gather blood, urine, and stool samples, along with details about your health journey through questionnaires. By building this 'biobank' and tracking your health over many years, scientists can study the disease in much greater detail.
Ultimately, the goal is to unlock a better understanding of ANCA-associated vasculitis. This includes finding 'predictors' – like early warning signs – that could tell doctors who is most likely to have a disease flare-up, or who might be at higher risk of complications like infections or heart problems. This vital research is about improving long-term care, helping doctors make more informed decisions about your treatment, and making sure patients get the most appropriate and personalised management for their condition.
Key takeaways
- Collecting samples to understand a rare immune condition.
- Aims to predict flare-ups and complications in ANCA-associated vasculitis.
- Will help develop better, more personalised treatments.
- Involves providing blood, urine, and stool samples over several years.
- Participation is voluntary and won't affect your current care.
Who may be eligible?
To take part in this study, you need to be an adult, aged 18 or older. There's no upper age limit. You must also be a patient who is already looked after by the specialist team at the reference centre for rare autoimmune diseases at the CHRU in Brest, France. Your doctor at this centre must have officially diagnosed you with ANCA-associated vasculitis using standard medical definitions.
You also need to be covered by the Social Security system (this relates to healthcare funding in France) and be able to give your clear agreement to participate by signing a consent form.
There are also some reasons why you wouldn't be able to join. For example, if you are under 18 or unable to give your consent, you can't be included. This also applies if you are pregnant or breastfeeding, or if you have very low levels of haemoglobin (a protein in your red blood cells) — below 7g/dL. We also can't include anyone who is under legal protection (like guardianship) or who simply doesn't wish 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?
- Are you a patient at the CHRU in Brest for a rare autoimmune disease?
- Has your doctor diagnosed you with ANCA-associated vasculitis?
- Are you covered by Social Security (healthcare funding)?
- Are you able to provide clear consent (agreement) to join?
- Are you not pregnant or breastfeeding?
What does participation involve?
If you decide to take part in this study, you would be asked to provide some samples and fill out questionnaires. This includes giving blood samples (about 80ml, which is roughly five tablespoons) and providing urine (20-40ml) and stool samples. You would also complete questionnaires that ask about your health and experiences. This study involves a 'multi-year follow-up,' meaning researchers will collect samples and information from you over several years during your regular clinic visits. There are no new medications given as part of this study, and it won't change your current medical treatment. You can stop participating at any time.
Potential risks and benefits
Locations (1)
- CHRU de Brest - Service de rhumatologieVerified postcodeBrest, France· Recruiting
Common questions
What is ANCA-associated vasculitis?
It's a rare condition where your immune system mistakenly attacks your body's small blood vessels, causing inflammation and damage.
Why is this study being done?
To understand the disease better, predict its course, and find more effective and personalised ways to manage it for patients.
What will I have to do if I join?
You'll be asked to provide blood, urine, and stool samples, and fill out health questionnaires over several years during your usual appointments.
Will my treatment change if I join?
No, this study will not affect your current medical treatment, nor will you be given any new medications or treatments.
Can I leave the study if I change my mind?
Yes, you can withdraw from the study at any time without giving a reason, and it will not affect your future medical care.
How to find out more
Divi CORNEC
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
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