Registry for hereditary autoinflammatory diseases
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
Run by University of Siena · NCT05200715 · Data updated 2026-11-12
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 type | Observational |
|---|---|
| Sex | All |
| Enrollment | 3500 (estimated) |
| Sponsor | University of Siena Academic / other |
| Locations | 112 sites (Algiers and 111 other locations) |
| Status | Recruiting |
| Started | August 6, 2020 |
| Main results expected | August 6, 2026 |
| Study ends | August 6, 2030 |
| Registry record updated | July 10, 2025 |
| Trial ID | NCT05200715 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates include individuals diagnosed with hereditary autoinflammatory diseases or related conditions such as Behçet's disease, Still disease, or PFAPA syndrome.
✕Probably 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.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
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.
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 gone: Other studies focusing on registries for rare diseases have shown success in improving understanding and treatment, indicating that this approach is promising.
Who can join: the full rules
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 it's running
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University Algiers 1
Algiers, Algeria Recruiting -
Université M'Hamed Bougara de Boumerdas
Boumerdas, Algeria Recruiting -
Flinders University
Adelaide, Australia Recruiting -
University of Adelaide
Adelaide, Australia Recruiting -
Antwerp University Hospital
Antwerp, Belgium Recruiting -
Hospital das Clinicas da Faculdade de Medicina HCFMUSP
São Paulo, Brazil Recruiting
Show 44 more locations
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Peking University People's Hospital
Beijing, China Recruiting -
The First Affiliated Hospital of Chongqing Medical University
Chongqing, China Recruiting -
Universidad del Rosario - Escuela de Medicina Y Ciencias de La Salud
Bogotá, Colombia Recruiting -
Mansoura University, Faculty of Medicine
Al Mansurah, Egypt Recruiting -
Al-Azhar University
Cairo, Egypt Recruiting -
Cairo University
Cairo, Egypt Recruiting -
Universitätsklinikum Schleswig-Holstein
Lübeck, Germany Recruiting -
Evangelismos General Hospital
Athens, Greece Recruiting -
National and Kapodistrian University of Athens
Athens, Greece Recruiting -
National and Kapodistrian University of Athens
Athens, Greece Recruiting -
Prabha Eye Clinic & Research Centre
Bangalore, India Recruiting -
Postgraduate Institute of Medical Education and Research
Chandigarh, India Recruiting -
Shariati Hospital - Tehran University of Medical Sciences
Tehran, Iran Recruiting -
Azienda Ospedaliero-Universitaria Senese
Siena, Tuscany, Italy Recruiting -
AOUC Policlinico di Bari
Bari, Italy Recruiting -
University of Bari Medical School
Bari, Italy Recruiting -
University-Hospital of Bari - UOC Medicina Interna
Bari, Italy Recruiting -
University-Hospital of Bari - UOC Pediatria
Bari, Italy Recruiting -
University-Hospital of Bari - UOC Reumatologia
Bari, Italy Recruiting -
Central Hospital of Bolzano
Bolzano, Italy Recruiting -
ASST degli Spedali Civili - P.O. Ospedale dei Bambini
Brescia, Italy Recruiting -
ASST degli Spedali Civili
Brescia, Italy Recruiting -
Azienda Ospedaliera Universitaria di Cagliari
Cagliari, Italy Recruiting -
AOU Policlinico Vittorio Emanuele - Dip. Materno-Infantile
Catania, Italy Recruiting -
ARNAS Garibaldi - Catania
Catania, Italy Recruiting -
Azienda Ospedaliera di Catanzaro Pugliese Ciaccio
Catanzaro, Italy Recruiting -
Ospedale SS Annunziata
Chieti, Italy Recruiting -
Ospedale San Paolo
Civitavecchia, Italy Recruiting -
Arcispedale Sant'Anna
Ferrara, Italy Recruiting -
Azienda Ospedaliera Universitaria Careggi - SOD Medicina Interna Interdisciplinare
Florence, Italy Recruiting -
Azienda Ospedaliero-Universitaria Careggi - SOD Immunologia e Terapie Cellulari
Florence, Italy Recruiting -
Azienda Ospedaliero-Universitaria Meyer
Florence, Italy Recruiting -
Azienza Ospedaliero-Universitaria Careggi - SOD Reumatologia
Florence, Italy Recruiting -
Ospedale San Giovanni di Dio
Florence, Italy Recruiting -
Sapienza University - Polo Pontino
Latina, Italy Recruiting -
Ospedale Vito Fazzi
Lecce, Italy Recruiting -
ASL1 Avezzano, Sulmona, L'Aquila
L’Aquila, Italy Recruiting -
Università degli Studi di L'Aquila - UOC Medicina Interna e Nefrologia
L’Aquila, Italy Recruiting -
AOU Policlinico G. Martino
Messina, Italy Recruiting -
ASST Gaetano Pini/ CTO
Milan, Italy Recruiting -
Policlinico di Milano
Milan, Italy Recruiting -
ASST Fatebenefratelli Sacco - UO Medicina Generale
Milan, Italy Recruiting -
ASST Fatebenefratelli Sacco - UOC Reumatologia
Milan, Italy Recruiting -
ASST Gaetano Pini/CTO
Milan, Italy Recruiting
+62 more sites. See ClinicalTrials.gov for the full list.
Study contacts
- Study coordinator: Luca Cantarini, MD,PhD
- Email: cantarini@unisi.it
- Phone: +393479385457
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Ocular Fluid Work-up in Presumed Trematode-Induced Granulomatous Uveitis
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PANDA-ASOCT: Detecting Uveitis in Children with Automated Eye Image Analysis
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This study tests whether the 2025 ASAS-SPARTAN criteria correctly classify axial spondyloarthritis in adults with chronic back pain in China.
-
Canakinumab use in Schnitzler’s syndrome in real-world patients
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How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.