RecruitingOBSERVATIONAL

Acostill ( RaDiCo Cohort) (RaDiCo Acostill)

The 'Acostill' study is looking into Still's disease, a rare inflammatory condition that can affect both children and adults. It's often called Adult-Onset Still's Disease (AOSD) or Systemic onset Juvenile Idiopathic Arthritis (SoJIA). The study wants to understand why this disease affects different age groups and why its symptoms and how it progresses can vary so much. Researchers hope to learn more about the disease's causes, find ways to diagnose it earlier, and improve treatments. By comparing information from many patients, they aim to create better care plans and open the door for new medicines in the future, particularly for patients in France.

At a glance

Status

Recruiting

Sponsor

Institut National de la Santé Et de la Recherche Médicale, France

Enrolment target

500

Start

11 Jul 2017

Estimated completion

01 Jul 2027

Still Disease Still's Disease, Adult-Onset Still Disease, Juvenile Onset

What is this study about?

Still's disease is a rare condition that causes the body to become very inflamed. It's known by different names depending on when it starts: Adult-Onset Still's Disease (AOSD) for adults and Systemic onset Juvenile Idiopathic Arthritis (SoJIA) for children. Doctors believe these are two sides of the same disease. People with Still's disease often experience high fevers, joint pain, a skin rash, and changes in their blood. While it's uncommon, affecting about 1 to 3 people in every 100,000, it can have serious effects on a person's health over time.

Currently, we don't fully understand why Still's disease happens. This study, called 'Acostill,' aims to find answers to important questions. For example, why does it affect children and adults differently? Why do some people have very similar symptoms while others have different ones? And why can the disease sometimes go away on its own, come back in 'flares,' or become a long-term problem? By studying a large group of patients, researchers hope to uncover the underlying causes of the disease, which could lead to more effective ways to treat it.

This research is a big team effort involving doctors who specialize in adult and children's health. They will collect information from many patients to compare the disease in adults and children, which has never been done on such a large scale before. Their main goals are to better understand how the disease works, find early warning signs, predict how it might progress, and find new treatments. Ultimately, they want to improve the care and lives of people living with Still's disease.

Key takeaways

This study aims to understand Still's disease better.
It will compare the disease in adults and children for the first time on a large scale.
Participation involves sharing medical information and samples from routine care.
The study hopes to find earlier diagnoses and better treatments.
It's a collaborative effort by specialists in adult and children's health.

Who may be eligible?

To be part of this study, you would either need to be over 16 years old and meet the specific criteria for Adult-Onset Still's Disease, or be 16 years old or younger and meet the criteria for Systemic onset Juvenile Idiopathic Arthritis. You'll also need to be willing to sign a consent form, which gives the research team permission to use your health information for the study. If you're under 18 or unable to make decisions for yourself, your parents or legal guardians would need to agree.

There are also certain conditions that would mean you can't join the study. This includes having other serious infections like tuberculosis, other types of inflammatory conditions like rheumatoid arthritis, or other autoimmune diseases such as lupus. If you have a known genetic condition that causes similar symptoms to Still's disease, you also wouldn't be able to take part. The study also cannot include individuals who are unable to understand the study information or sign the consent form.

Essentially, the study is looking for people who definitively have Still's disease and do not have other conditions that could confuse the study results.

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 over 16 and diagnosed with Adult-Onset Still's Disease?
Or are you 16 or younger and diagnosed with Systemic onset Juvenile Idiopathic Arthritis?
Are you willing to sign a consent form for your medical data to be used?
Do you not have other confirmed inflammatory or autoimmune conditions?
Do you not have known genetic conditions that mimic Still's disease?

Answer every question to see your result.

What does participation involve?

This study is primarily about collecting information and samples from patients as part of a 'cohort' – like a group of people doctors are watching over time. It doesn't involve testing new medications. The exact number of visits isn't specified, but participation would involve consenting to have your clinical and biological data collected. This means doctors would gather information from your medical records and possibly some blood or other samples taken during your routine medical care. The study aims for a 'standardised follow-up,' meaning the way information is collected will be consistent for everyone. The total duration of participation isn't mentioned but would likely depend on how long you remain under the care of your doctors within the study network.

Potential risks and benefits

Participating in this study involves minimal direct risks, as it mainly uses information and samples already collected during your standard medical care. There are no new treatments or procedures involved. The main benefit is knowing you are contributing important information that could help doctors better understand Still's disease, potentially leading to improved diagnosis and treatment for others in the future. You have the right to withdraw from the study at any time without affecting your medical care.

Locations (1)

RaDiCo-AcoStill
Verified postcode
Paris, France· Recruiting

Common questions

What is Still's disease?

Still's disease is a rare inflammatory condition that causes symptoms like high fever, joint pain, and skin rash. It can affect children (SoJIA) and adults (AOSD).

What is the main goal of this study?

The main goal is to better understand Still's disease, including why it affects different age groups, how it develops, and to find better ways to diagnose and treat it.

Will I receive new treatment if I join this study?

No, this study is about collecting information and samples from your routine care to learn more about the disease. It does not involve new treatments or medications.

How long will I be in the study?

The study collects information over time, but the specific duration for each participant isn't mentioned. It will likely follow your medical progress as part of your ongoing care.

Can I leave the study if I change my mind?

Yes, you can choose to stop participating in the study at any time without it affecting your medical care.

How to find out more

Sophie Georgin-Lavialle, PHD

sophie.georgin-lavialle@aphp.fr 0033 156017447 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.