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Registry for hereditary autoinflammatory diseases

Development of an International Multicenter Registry of Patients With Monogenic and Polygenic Autoinflammatory Diseases Aimed at Clinical and Therapeutical Data Collection and Analysis

Observational University of Siena · NCT05200715

This study is collecting information about hereditary autoinflammatory diseases to see how they affect patients of different ages and genders, with the goal of improving treatment and care for everyone affected.

Quick facts

Study typeObservational
Enrollment3500 (estimated)
SexAll
SponsorUniversity of Siena Academic / other
Locations112 sites (Algiers and 111 other locations)
Trial IDNCT05200715 on ClinicalTrials.gov

What this trial studies

The AIDA registry collects data on hereditary autoinflammatory diseases and related conditions to better understand their clinical manifestations and treatment outcomes. Utilizing a secure online platform, the registry aims to identify associations between various factors such as gender and disease duration, and to compare clinical phenotypes between pediatric and adult patients. Over the next decade, the project seeks to enhance international collaboration and knowledge sharing regarding these rare diseases, ultimately improving patient care and treatment strategies.

Who should consider this trial

Good fit: Ideal candidates include individuals diagnosed with hereditary autoinflammatory diseases or related conditions such as Behçet's disease, Still disease, or PFAPA syndrome.

Not a fit: Patients who do not have a confirmed diagnosis of the specified autoinflammatory diseases or who cannot provide informed consent may not benefit from this registry.

Why it matters

Potential benefit: If successful, this registry could lead to improved diagnosis and treatment options for patients with rare autoinflammatory diseases.

How similar studies have performed: Other studies focusing on registries for rare diseases have shown success in improving understanding and treatment, indicating that this approach is promising.

Eligibility criteria

Show full inclusion / exclusion criteria 
Inclusion Criteria:

* 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;

Exclusion Criteria:

\- informed consent/assent not provided by the patient and/or his/her legal representative.

Where this trial is running

Algiers and 111 other locations

+62 more sites — see ClinicalTrials.gov for the full list.

Study contacts

How to participate

  1. Review the eligibility criteria above with your treating physician.
  2. Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
  3. Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
View on ClinicalTrials.gov → Find more trials like this →
Conditions Hereditary Autoinflammatory DiseasesSchnitzler SyndromeBehcet SyndromePFAPA SyndromeStill DiseaseAutoinflammatory Syndrome, UnspecifiedUveitisScleritis
Last reviewed 2026-06-09 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.