International registry collecting health information on people with autoinflammatory diseases
Collects clinical and treatment data from people with inherited and other autoinflammatory diseases.
Key facts
- Who runs it
- University of Siena
- Where
- Algeria, Australia, Belgium, Brazil, China, Colombia, Egypt, Germany, Greece, India, Iran, Italy, Libya, Martinique, Mexico, Poland, Romania, Saudi Arabia, Spain, Tunisia, Türkiye, and Ukraine107 sites in 22 countriesChoose a country to see its sites
- Trial code
- Registry title
- AutoInflammatory Disease Alliance Registry (AIDA)
- Status
- Recruiting
- People taking part
- 3,500 people, planned
- Started
- 6 Aug 2020
- Expected to end
- 6 Aug 2030
- Type of study
- Observational
- Treatments tested
- No intervention is foreseen by the protocol.
- Record updated
- 10 July 2025
Who can take part
AI summary
From the trial's eligibility criteria. Machine-read from the registry text on this page, so it can be wrong. The registry text below and the trial team decide who can take part.
This registry collects health, genetic and treatment data on people with autoinflammatory diseases. These are diseases with repeated bouts of inflammation without infection. The registry does not give any treatment.
- Sex
- All sexes can join.
- Disease stage
- People can join with any of these: a monogenic (single-gene) autoinflammatory disease, familial Mediterranean fever, Behçet's disease, Still disease, PFAPA syndrome, Schnitzler's disease, CRMO, undifferentiated systemic autoinflammatory disease, non-infectious uveitis (SUN criteria), anterior or posterior non-infectious scleritis, spondyloarthritis (ASAS and/or New York criteria), or Castleman disease.
- Biomarker or test result
- For a monogenic autoinflammatory disease, a gene test must confirm the diagnosis.
Main reasons for not taking part
- The patient or their legal representative has not given informed consent or assent.
The registry criteria, word for word
Show all 8 criteriaShow less
Who can take part
- to be diagnosed with a monogenic AID according to the clinical phenotype and the detection of a confirmative genotype
- to be diagnosed with clinical familial Mediterranean fever or Behçet's disease or Still disease or PFAPA syndrome or Schnitzler's disease or CRMO according to the corresponding clinical diagnostic and/or classification criteria
- to be diagnosed with undifferentiated systemic AID
- to be diagnosed with non-infectious uveitis according to the standardization for uveitis nomenclature (SUN) criteria
- to be diagnosed with anterior or posterior non-infectious scleritis
- to be diagnosed with spondyloarthritis according to ASAS and/or New York criteria
- to be diagnosed with Castleman disease
Who cannot take part
- informed consent/assent not provided by the patient and/or his/her legal representative
This trial has no sites in United States.
It has sites in 22 countries. Choose a country to see its sites.
About the trial
What the trial wants to find out
Autoinflammatory diseases (AID) are clinical entities characterized by recurrent inflammatory attacks in absence of infection, neoplasm or deregulation of the adaptive immune system. Among them, hereditary periodic syndromes, also known as monogenic AID, represent the prototype of this disease group, caused by mutations in genes involved in the regulation of innate immunity, inflammation and cell death. Based on recent experimental acquisitions in the field of monogenic AID, several immunologic disorders have been reclassified as polygenic/multifactorial AID, sharing pathogenetic and clinical features with hereditary periodic fevers. This has paved the way to new treatment targets for patients suffering from rare diseases of unknown origin, including Behçet's disease, Still disease, Schnitzler's disease, PFAPA (periodic fever, aphthous stomatitis, pharyngitis and cervical adenitis) syndrome, chronic recurrent multifocal osteomyelitis (CRMO), non-infectious uveitis and scleritis. Gathering information on such rare conditions is made difficult by the small number of patients, along with the difficulty of obtaining an accurate diagnosis in non-specialized clinical settings.
Read full original descriptionShow less
In this context, the AIDA project promotes international collaboration among clinical centres to develop a permanent registry aimed at collecting demographic, genetic, clinical and therapeutic data of patients affected by monogenic and polygenic AID, in order to expand the current knowledge of these rare conditions.
The group in the trial
- Patients affected by autoinflammatory diseases
Treatment: No intervention is foreseen by the protocol.
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Contact the study team: see the registry record → Contacts and Locations
Print a page for my doctorData and sources
- Registry record
- Listed on ClinicalTrials.gov.
- Official title
- Development of an International Multicenter Registry of Patients With Monogenic and Polygenic Autoinflammatory Diseases Aimed at Clinical and Therapeutical Data Collection and Analysis
- Plain-language title
- International registry collecting health information on people with autoinflammatory diseasesGenerated from the registry record. The registry title is the official one.
- AI summary
- From the trial's eligibility criteria. Read by machine on 15 November 2026.
- Record updated
- 10 July 2025