Biocollection of Rare Pediatric-onset of Autoimmune and Autoinflammatory Diseases
This study is creating a special collection of blood samples from children and adults who have rare autoimmune or autoinflammatory diseases, and also from their family members. These diseases are uncommon and develop when the body's immune system doesn't work correctly. By studying these blood samples, researchers hope to uncover more about the genetic and immune system changes connected to these conditions. This deeper understanding could lead to new diagnostic tools and better treatments in the future, particularly for diseases that start in childhood. Your participation could help advance medical knowledge for these rare conditions.
At a glance
What is this study about?
Imagine your body's immune system as its own personal army, designed to fight off infections and keep you healthy. In autoimmune diseases, this army mistakenly attacks your own healthy body parts. Autoinflammatory diseases are similar, but they involve a different part of the immune system that overreacts. Both types can be very serious, especially when they start in childhood.
These diseases are called 'rare' because they don't affect many people – around 1 in 2,000. Because they're so rare, it's been difficult for scientists to gather enough information and samples to properly understand them. This study aims to change that by building a special collection of blood samples from people with rare autoimmune and autoinflammatory conditions, and also from their close relatives. This collection will include different parts of the blood, like DNA, which carries your genetic code, and cells that are involved in your immune system.
By carefully studying these samples, researchers hope to identify specific genetic changes or immune system abnormalities that contribute to these diseases. This information is crucial for developing better ways to diagnose these conditions earlier and create more effective treatments. Your contribution to this collection could be a vital step forward in helping children and adults living with these challenging rare diseases.
Key takeaways
- Aims to collect blood samples for rare autoimmune and autoinflammatory diseases.
- Helps researchers understand these conditions better.
- Could lead to new diagnoses and treatments for childhood-onset diseases.
- Primarily a single blood donation.
- No direct personal medical benefit, but crucial for scientific advancement.
- You can withdraw at any time.
Who may be eligible?
To take part in this study, you could be a child or an adult who has been diagnosed with a rare autoimmune or autoinflammatory disease that started before they were 18. This includes conditions like lupus or certain types of arthritis. We are also looking for family members of people with these conditions.
There are a few health requirements: participants must weigh more than 5 kilograms (about 11 pounds) and be signed up for a social security scheme. Importantly, you and your parents or guardians (if you're under 18) must understand what the study involves and agree to take part by signing a consent form.
We are also looking for healthy volunteers, both children and adults, of any age who weigh more than 5 kilograms and are part of a social security scheme. However, healthy volunteers cannot join if they have an active infection, have had cancer in the last five years, have a personal or family history of autoimmune disease, or have a weakened immune system.
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.
- Do you have a rare autoimmune or autoinflammatory condition?
- Did your condition start before you turned 18?
- Do you weigh more than 5 kilograms (about 11 pounds)?
- Are you, or your child, part of a social security scheme?
- Are you willing to give a blood sample?
- For healthy volunteers: Do you have no chronic illnesses or recent infections?
What does participation involve?
Taking part in this study primarily involves donating a blood sample. This blood sample will be used for several different tests. Researchers will look at your genes (your DNA) to see if there are any specific genetic changes linked to your condition. They will also examine your immune system's responses and look for special markers in your blood that might indicate the disease. This is a "bio-collection" study, which means we are gathering samples to store for future research; it doesn't involve new medication or regular doctor's visits related to the study. It's a one-off donation that helps build this important collection for research.
Potential risks and benefits
Locations (13)
- Service de rhumatologie pédiatrique Hôpital Femme-Mère-enfantVerified postcodeBron, France· Recruiting
- Hôpital Jeanne de Flandre (CHU de Lille)Verified postcodeLille, France· Not yet recruiting
- Hôpital Claude Huriez (CHU de Lille)Verified postcodeLille, France· Not yet recruiting
- Hôpital Archet 2Verified postcodeNice, France· Not yet recruiting
- Hôpital Necker-Enfants Malades (AP-HP)Verified postcodeParis, France· Not yet recruiting
- Hôpital Robert Debré (AP-HP)Verified postcodeParis, France· Not yet recruiting
- Hôpital Kremlin-Bicêtre (AP-HP)Verified postcodeParis, France· Not yet recruiting
- Hôpital Nord (CHU ST-Etienne)Verified postcodeSaint-Etienne, France· Not yet recruiting
- Hôpital Couple EnfantVerified postcodeGrenoble, France· Not yet recruiting
- Dr Isabelle MELKIVerified postcodeParis, France· Recruiting
- CLCC Henri BecquerelVerified postcodeRouen, France· Not yet recruiting
- Pr Ariane ZALOSZYCVerified postcodeStrasbourg, France· Recruiting
Common questions
What is an autoimmune disease?
It's when your body's immune system mistakenly attacks its own healthy cells and tissues, rather than fighting off germs.
What is an autoinflammatory disease?
Similar to autoimmune, but it involves a different part of your immune system overreacting and causing inflammation.
Why is it important to study rare diseases?
Because they affect fewer people, there's often less information and research available, making diagnosis and treatment more challenging.
Will I get results from my blood sample?
This study is for research purposes, so individual results from your sample won't be given back to you directly.
How long will my blood sample be stored?
Your sample will be stored in a special collection for future research, following strict ethical guidelines.
How to find out more
BELOT Alexandre, Pr
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
Discussion
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