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RecruitingNAINTERVENTIONAL

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

Status
Recruiting
Phase
NA
Sponsor
Hospices Civils de Lyon
Enrolment target
400
Start
26 Feb 2025
Estimated completion
27 Jul 2035

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.

  1. Do you have a rare autoimmune or autoinflammatory condition?
  2. Did your condition start before you turned 18?
  3. Do you weigh more than 5 kilograms (about 11 pounds)?
  4. Are you, or your child, part of a social security scheme?
  5. Are you willing to give a blood sample?
  6. For healthy volunteers: Do you have no chronic illnesses or recent infections?
Answer every question to see your result.

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

The main benefit of taking part is contributing to research that could lead to a better understanding, diagnosis, and treatment of rare autoimmune and autoinflammatory diseases in the future. While there's no direct personal benefit from this study, your contribution is invaluable to science. The main risk involves giving a blood sample, which might cause a little discomfort, bruising, or, very rarely, infection at the venepuncture site. You are free to withdraw from the study at any time without explaining why, and this will not affect your medical care.

Locations (13)

  • Service de rhumatologie pédiatrique Hôpital Femme-Mère-enfant
    Verified postcode
    Bron, France· Recruiting
  • Hôpital Jeanne de Flandre (CHU de Lille)
    Verified postcode
    Lille, France· Not yet recruiting
  • Hôpital Claude Huriez (CHU de Lille)
    Verified postcode
    Lille, France· Not yet recruiting
  • Hôpital Archet 2
    Verified postcode
    Nice, France· Not yet recruiting
  • Hôpital Necker-Enfants Malades (AP-HP)
    Verified postcode
    Paris, France· Not yet recruiting
  • Hôpital Robert Debré (AP-HP)
    Verified postcode
    Paris, France· Not yet recruiting
  • Hôpital Kremlin-Bicêtre (AP-HP)
    Verified postcode
    Paris, France· Not yet recruiting
  • Hôpital Nord (CHU ST-Etienne)
    Verified postcode
    Saint-Etienne, France· Not yet recruiting
  • Hôpital Couple Enfant
    Verified postcode
    Grenoble, France· Not yet recruiting
  • Dr Isabelle MELKI
    Verified postcode
    Paris, France· Recruiting
  • CLCC Henri Becquerel
    Verified postcode
    Rouen, France· Not yet recruiting
  • Pr Ariane ZALOSZYC
    Verified postcode
    Strasbourg, 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?

Register your interest

Share your details and the research team for "Biocollection of Rare Pediatric-onset of Autoimmune and Auto…" will contact you if you may be eligible. Always speak to your GP before agreeing to take part.

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