Hereditary periodic fever syndrome

This study looks at how patients with Familial Mediterranean Fever (FMF) and Still's disease (including systemic juvenile idiopathic arthritis and adult-onset Still's disease) use the drug canakinumab (Ilaris) over the long term. Researchers will track 160 patients across Europe …

This study watches children and adults who are already taking or about to start Ilaris for hereditary periodic fever syndromes or systemic juvenile idiopathic arthritis. Researchers will track side effects and how well the drug controls symptoms over 16 weeks. No new medicine is …

This early-phase trial is testing an experimental drug called JTE-162 in 5 adults with CAPS, a rare condition that causes fever, rash, and joint pain. Participants take one tablet daily for 2 weeks. Researchers will check if the drug safely reduces inflammation and improves sympt…

This study tests a radioactive tracer called 124I-AT-01 that binds to amyloid clumps in the body. Researchers want to see if PET/CT scans can detect amyloidosis in organs of people with CAPS who developed it from anakinra injections. Thirty adults will be scanned every 6 months f…

This study tests a new skin test (C-TST) to find hidden tuberculosis (TB) infection in people with rheumatic diseases like rheumatoid arthritis who are about to start powerful medications called biologics. These drugs can reactivate dormant TB, so accurate screening is critical. …

This study is testing whether the shingles vaccine (RZV) works and is safe for adults with autoimmune rheumatic diseases like rheumatoid arthritis or lupus who are taking immune-suppressing drugs. Two hundred participants will receive two doses of the vaccine. Researchers will me…

This study looks at how well the shingles vaccine works in people with weakened immune systems, such as those with cancer or autoimmune diseases. Researchers will measure immune responses and track side effects in 300 adults. The goal is to see if the vaccine can effectively prev…

This study will analyze DNA from up to 20,000 people, including those with immune disorders and their relatives, to find genetic variants linked to conditions like atopy, autoimmunity, and primary immunodeficiency. Researchers will also study how best to return genetic results to…

This study aims to learn more about the genetics and natural history of autoinflammatory diseases, which cause repeated fevers and inflammation. Researchers will study up to 5,000 people, including patients, their relatives, and healthy volunteers. Participants provide blood and …

This study aims to learn more about the causes of rheumatic diseases—conditions that cause joint pain, stiffness, and swelling—and why they often affect minority groups more severely. Researchers will observe up to 7,500 adults with known or suspected rheumatic disease, providing…

This study is collecting joint fluid and tissue samples from 50 adults with inflammatory or non-inflammatory bone and joint diseases. Researchers will use both standard and advanced lab techniques to find new biomarkers that could help diagnose rheumatic diseases more accurately …

This study follows 4,000 people with interstitial lung disease (including conditions like pulmonary fibrosis and sarcoidosis) to understand how the disease naturally changes over time. Researchers will collect medical data and blood samples, and compare them to a healthy control …

This study follows up to 5,000 people with autoinflammatory diseases (like NOMID, CANDLE, and juvenile dermatomyositis) and their healthy relatives. Researchers will collect medical history, blood samples, and imaging over 2-5 day visits to learn how these diseases work and find …

This study is looking at 50 children and adults with rare autoinflammatory diseases—conditions where the immune system causes inflammation without a clear reason. Researchers want to find what leads to a faster diagnosis, what factors are linked to these diseases, and which treat…

This study looks at young adults with chronic inflammatory rheumatic diseases who are moving from pediatric to adult healthcare. Researchers want to see if a structured program that includes education workshops and joint doctor visits helps patients manage their own care better. …

This study aims to learn more about PFAPA, a condition that causes repeated fevers, sore throats, and mouth sores in children. Researchers will collect blood, saliva, stool, and tonsil tissue from 1,500 people with PFAPA or other tonsil problems. No treatment is given; the goal i…

This study is for people with certain autoinflammatory diseases (like NOMID, DIRA, CANDLE, SAVI, and others) and their healthy relatives. Researchers want to learn more about what causes these diseases and how they affect the body over time. Participants will have medical tests a…

This study aims to create a large collection of blood samples and medical information from 800 people with autoimmune or inflammatory skin diseases. Researchers will use these samples to find new biomarkers and better understand what causes these conditions. The goal is to help d…

This study is looking for new genes and biological markers that cause systemic autoinflammatory diseases (SAIDs), a group of rare conditions that cause repeated fevers and inflammation. Researchers will analyze the DNA and blood of 300 patients to find disease-causing mutations a…

This study looks at whether people with CAPS (a rare genetic inflammatory condition) have disrupted circadian rhythms—the body's natural day-night cycle. Researchers will measure melatonin levels and track activity with a watch in 30 participants (patients and healthy household m…

This study reviews past medical records of 12 people with Familial Mediterranean Fever to see how well different drugs control symptoms in everyday practice. Researchers will measure symptom improvement using patient ratings. The goal is to understand which treatments work best o…

This study is developing a patient-reported outcome measure (PROM) to assess how steroids affect the quality of life of children and young people with rheumatic conditions. Researchers will hold focus groups and interviews with 70 participants and their families to create and tes…

This study is not a treatment trial. It aims to collect blood samples from 400 children and their relatives who have rare autoimmune or autoinflammatory diseases (like lupus or juvenile arthritis). Researchers will analyze the samples to find genetic mutations that cause these co…

This study is an online survey for 1,000 adults diagnosed with a rheumatic or musculoskeletal disease living in a EULAR country. Participants will answer periodic questionnaires about their healthcare, social life, and work. The goal is to gather real-world data to help researche…

This observational study follows up to 20,000 children and young adults with pediatric-onset rheumatic diseases, such as juvenile idiopathic arthritis. Researchers collect data on treatments, safety, and long-term outcomes to better understand these conditions. The registry does …

This study will examine chest CT scans from 500 adults with rheumatoid arthritis, connective tissue diseases, or idiopathic pulmonary fibrosis to better understand lung disease patterns. Researchers want to see which scan features are most common in rheumatoid arthritis-related i…

This study looks at people with autoinflammatory diseases or AA amyloidosis who have genetic changes that are hard to interpret. Researchers want to understand if these changes actually cause the disease. The goal is to improve diagnosis and knowledge, not to test a new treatment…