Actively Recruiting

All Genders
ID05200715

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

Led by University of Siena · Updated on 2025-07-10

3500

Participants Needed

112

Research Sites

208 weeks

Total Duration

On this page

AI-Summary

What this Trial Is About

Researchers are investigating autoinflammatory diseases (AID), which involve recurring inflammatory episodes without infection, cancer, or adaptive immune system problems. This study focuses on both monogenic hereditary periodic syndromes and polygenic or multifactorial AID, including rare conditions like Behçet's disease, Still disease, Schnitzler's disease, PFAPA syndrome, chronic recurrent multifocal osteomyelitis, non-infectious uveitis and scleritis, among others. The goal is to gather detailed data to improve understanding and management of these rare diseases through an international collaboration. The study uses the AIDA registry, a secure online platform for collecting demographic, genetic, clinical, laboratory, radiologic, and therapeutic information. Data are gathered retrospectively and prospectively during routine clinical visits scheduled every 3-6 months. Eleven registries focus on different AID conditions, enabling comprehensive data collection to identify clinical patterns, treatment impacts, and long-term outcomes over a period of at least 10 years. Participants provide information during their usual care visits, allowing researchers to track changes in disease activity, organ involvement, inflammatory markers, visual function, pain levels, fatigue, fertility, and socioeconomic factors. The study monitors these outcomes over multiple timepoints up to 120 months. Data privacy is ensured by pseudonymizing patient information. This registry supports multiple clinical studies and aims to enhance knowledge, awareness, and future research on autoinflammatory diseases worldwide.

CONDITIONS

Brief Title

AutoInflammatory Disease Alliance Registry (AIDA)

Who Can Participate

All Genders

Eligibility Criteria

Eligible

You may qualify if you...

  • Diagnosed with a monogenic autoinflammatory disease based on clinical features and confirmative genetic testing
  • Diagnosed with familial Mediterranean fever, Behçet's disease, Still disease, PFAPA syndrome, Schnitzler's disease, or chronic recurrent multifocal osteomyelitis according to established criteria
  • Diagnosed with undifferentiated systemic autoinflammatory disease
  • Diagnosed with non-infectious uveitis following standard nomenclature criteria
  • Diagnosed with anterior or posterior non-infectious scleritis
  • Diagnosed with spondyloarthritis according to ASAS and/or New York criteria
  • Diagnosed with Castleman disease
Not Eligible

You will not qualify if you...

  • Informed consent or assent not provided by the patient or their legal representative

AI-Screening

AI-Powered Screening

Complete this quick 3-step screening to check your eligibility

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Your Study Journey

Screening

Duration - 2 to 4 weeks

Participants are screened for eligibility to participate in the trial.

1 screening and enrollment visit (in-person or remote)

Long-term Monitoring

Duration - Up to 10 years

Participants diagnosed with autoinflammatory diseases are observed over time with data collected during routine clinical visits.

Routine visits every 3 to 6 months

Trial Site Locations

Total: 112 locations

1

University Algiers 1

Algiers, Algeria

Actively Recruiting

2

Université M'Hamed Bougara de Boumerdas

Boumerdas, Algeria

Actively Recruiting

3

Flinders University

Adelaide, Australia

Actively Recruiting

4

University of Adelaide

Adelaide, Australia

Actively Recruiting

5

Antwerp University Hospital

Antwerp, Belgium

Actively Recruiting

6

Hospital das Clinicas da Faculdade de Medicina HCFMUSP

São Paulo, Brazil

Actively Recruiting

7

Peking University People's Hospital

Beijing, China

Actively Recruiting

8

The First Affiliated Hospital of Chongqing Medical University

Chongqing, China

Actively Recruiting

9

Universidad del Rosario - Escuela de Medicina Y Ciencias de La Salud

Bogotá, Colombia

Actively Recruiting

10

Mansoura University, Faculty of Medicine

Al Mansurah, Egypt

Actively Recruiting

11

Al-Azhar University

Cairo, Egypt

Actively Recruiting

12

Cairo University

Cairo, Egypt

Actively Recruiting

13

Universitätsklinikum Schleswig-Holstein

Lübeck, Germany

Actively Recruiting

14

Evangelismos General Hospital

Athens, Greece

Actively Recruiting

15

National and Kapodistrian University of Athens

Athens, Greece

Actively Recruiting

16

National and Kapodistrian University of Athens

Athens, Greece

Actively Recruiting

17

Prabha Eye Clinic & Research Centre

Bangalore, India

Actively Recruiting

18

Postgraduate Institute of Medical Education and Research

Chandigarh, India

Actively Recruiting

19

Shariati Hospital - Tehran University of Medical Sciences

Tehran, Iran

Actively Recruiting

20

Azienda Ospedaliero-Universitaria Senese

Siena, Tuscany, Italy, 53100

Actively Recruiting

21

AOUC Policlinico di Bari

Bari, Italy

Actively Recruiting

22

University of Bari Medical School

Bari, Italy

Actively Recruiting

23

University-Hospital of Bari - UOC Medicina Interna

Bari, Italy

Actively Recruiting

24

University-Hospital of Bari - UOC Pediatria

Bari, Italy

Actively Recruiting

25

University-Hospital of Bari - UOC Reumatologia

Bari, Italy

Actively Recruiting

26

Central Hospital of Bolzano

Bolzano, Italy

Actively Recruiting

27

ASST degli Spedali Civili - P.O. Ospedale dei Bambini

Brescia, Italy

Actively Recruiting

28

ASST degli Spedali Civili

Brescia, Italy

Actively Recruiting

29

Azienda Ospedaliera Universitaria di Cagliari

Cagliari, Italy

Actively Recruiting

30

AOU Policlinico Vittorio Emanuele - Dip. Materno-Infantile

Catania, Italy

Actively Recruiting

31

ARNAS Garibaldi - Catania

Catania, Italy

Actively Recruiting

32

Azienda Ospedaliera di Catanzaro Pugliese Ciaccio

Catanzaro, Italy

Actively Recruiting

33

Ospedale SS Annunziata

Chieti, Italy

Actively Recruiting

34

Ospedale San Paolo

Civitavecchia, Italy

Actively Recruiting

35

Arcispedale Sant'Anna

Ferrara, Italy

Actively Recruiting

36

Azienda Ospedaliera Universitaria Careggi - SOD Medicina Interna Interdisciplinare

Florence, Italy

Actively Recruiting

37

Azienda Ospedaliero-Universitaria Careggi - SOD Immunologia e Terapie Cellulari

Florence, Italy

Actively Recruiting

38

Azienda Ospedaliero-Universitaria Meyer

Florence, Italy

Actively Recruiting

39

Azienza Ospedaliero-Universitaria Careggi - SOD Reumatologia

Florence, Italy

Actively Recruiting

40

Ospedale San Giovanni di Dio

Florence, Italy

Actively Recruiting

41

Sapienza University - Polo Pontino

Latina, Italy

Actively Recruiting

42

Ospedale Vito Fazzi

Lecce, Italy

Actively Recruiting

43

ASL1 Avezzano, Sulmona, L'Aquila

L’Aquila, Italy

Actively Recruiting

44

Università degli Studi di L'Aquila - UOC Medicina Interna e Nefrologia

L’Aquila, Italy

Actively Recruiting

45

AOU Policlinico G. Martino

Messina, Italy

Actively Recruiting

46

ASST Gaetano Pini/ CTO

Milan, Italy

Actively Recruiting

47

Policlinico di Milano

Milan, Italy

Actively Recruiting

48

ASST Fatebenefratelli Sacco - UO Medicina Generale

Milan, Italy

Actively Recruiting

49

ASST Fatebenefratelli Sacco - UOC Reumatologia

Milan, Italy

Actively Recruiting

50

ASST Gaetano Pini/CTO

Milan, Italy

Actively Recruiting

51

IRCCS Ospedale San Raffaele

Milan, Italy

Actively Recruiting

52

Ospedale Fatebenefratelli e Oftalmico

Milan, Italy

Actively Recruiting

53

Ospedale Fatebenefratelli e Oftalmico

Milan, Italy

Actively Recruiting

54

AORN Cardarelli

Naples, Italy

Actively Recruiting

55

AOU Federico II

Naples, Italy

Actively Recruiting

56

AOU Federico II

Naples, Italy

Actively Recruiting

57

AOU Luigi Vanvitelli - UO Reumatologia

Naples, Italy

Actively Recruiting

58

AOU Luigi Vanvitelli - UOC Pediatria 2

Naples, Italy

Actively Recruiting

59

Azienda Ospedaliera Universitaria di Padova

Padova, Italy

Actively Recruiting

60

ARNAS Civico Di Cristina Benfratelli

Palermo, Italy

Actively Recruiting

61

ARNAS Ospedale Civico di Cristina Benfratelli

Palermo, Italy

Actively Recruiting

62

Azienda Ospedaliera Ospedali Riuniti Villa Sofia-Cervello

Palermo, Italy

Actively Recruiting

63

Università degli Studi di Palermo

Palermo, Italy

Actively Recruiting

64

Fondazione IRRCS San Matteo - SC Reumatologia

Pavia, Italy

Actively Recruiting

65

Azienda Ospedaliera di Perugia

Perugia, Italy

Actively Recruiting

66

Azienda Ospedaliero Universitaria Pisana

Pisa, Italy

Actively Recruiting

67

University of Pisa

Pisa, Italy

Actively Recruiting

68

AOU Policlinico Umberto I

Roma, Italy

Actively Recruiting

69

Azienda Ospedaliera San Camillo Forlanini

Roma, Italy

Actively Recruiting

70

IRCCS Fondazione PU Agostino Gemelli - UOC Medicina Interna Columbus

Roma, Italy

Actively Recruiting

71

IRCCS Fondazione PU Agostino Gemelli - UOC Pediatria

Roma, Italy

Actively Recruiting

72

Ospedale Pediatrico Bambino Gesù

Roma, Italy

Actively Recruiting

73

Ospedale Universitario Campus Bio-Medico

Roma, Italy

Actively Recruiting

74

Sapienza University - Polo Pontino

Roma, Italy

Actively Recruiting

75

Università di Roma Tor Vergata

Roma, Italy

Actively Recruiting

76

Azienda Ospedaliera Universitaria di Salerno

Salerno, Italy

Actively Recruiting

77

ATS Sardegna

Tempio Pausania, Italy

Actively Recruiting

78

AO Ordine Mauriziano

Torino, Italy

Actively Recruiting

79

A.S.L. Vercelli - Ospedale S. Andrea

Vercelli, Italy

Actively Recruiting

80

Azienda Ospedaliera Universitaria Integrata

Verona, Italy

Actively Recruiting

81

Tripoli Children Hospital

Tripoli, Libya

Actively Recruiting

82

Tripoli Children Hospital

Tripoli, Libya

Actively Recruiting

83

University Hospital of Martinique

Fort-de-France, Martinique

Actively Recruiting

84

Asociacion para Evitar la Ceguera en México

Mexico City, Mexico

Actively Recruiting

85

Instituto Nacional de Ciencias Médicas y Nutrición Salvador Zubirán

Mexico City, Mexico

Actively Recruiting

86

Medical University of Lodz

Lodz, Poland

Actively Recruiting

87

Central Clinical Hospital of the Ministry of National Defense - Military Institute of Medicine

Warsaw, Poland

Actively Recruiting

88

Sf. Maria Hospital - University of Medicine and Pharmacy "Carol Davila"

Bucharest, Romania

Actively Recruiting

89

Jazan University

Jizan, Saudi Arabia

Actively Recruiting

90

King Faisal Specialist Hospital and Research Center

Riyadh, Saudi Arabia

Actively Recruiting

91

King Saud University

Riyadh, Saudi Arabia

Actively Recruiting

92

Hospital Universitario Cruces - Instituto de investigación sanitaria Biocruces

Barakaldo, Spain

Actively Recruiting

93

Hospital Universitario Cruces

Barakaldo, Spain

Actively Recruiting

94

Hospital Clinic of Barcelona

Barcelona, Spain

Actively Recruiting

95

Hospital Fundación Jiménez Díaz

Madrid, Spain

Actively Recruiting

96

Hospital Ramón y Cajal

Madrid, Spain

Actively Recruiting

97

Hospital Universitario Fundación Jiménez Díaz/Hospital Universitario Rey Juan Carlos

Madrid, Spain

Actively Recruiting

98

Hospital Universitario Marqués de Valdecilla

Santander, Spain

Actively Recruiting

99

Hospital Universitari Doctor Peset

Valencia, Spain

Actively Recruiting

100

Farhat Hached Hospital

Sousse, Tunisia

Actively Recruiting

101

Çukurova University

Adana, Turkey (Türkiye)

Actively Recruiting

102

Ankara Yıldırım Beyazıt University

Ankara, Turkey (Türkiye)

Actively Recruiting

103

Gazi University

Ankara, Turkey (Türkiye)

Actively Recruiting

104

Hacettepe University Faculty of Medicine

Ankara, Turkey (Türkiye)

Actively Recruiting

105

Başakşehir Çam and Sakura City Hospital

Istanbul, Turkey (Türkiye)

Actively Recruiting

106

Cerrahpasa Medical School Istanbul University

Istanbul, Turkey (Türkiye)

Actively Recruiting

107

Marmara University, Research And Education Hospital

Istanbul, Turkey (Türkiye)

Actively Recruiting

108

Dokuz Eylul University School of Medicine

Izmir, Turkey (Türkiye)

Actively Recruiting

109

Manisa Celal Bayar University

Manisa, Turkey (Türkiye)

Actively Recruiting

110

Sakarya University

Sakarya, Turkey (Türkiye)

Actively Recruiting

111

Sivas Cumhuriyet University

Sivas, Turkey (Türkiye)

Actively Recruiting

112

I. Horbachevsky Ternopil National Medical University - Ternopil Regional Children's Hospital

Ternopil, Ukraine

Actively Recruiting

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Research Team

L

Luca Cantarini, MD,PhD

How is the study designed?

Study Type

OBSERVATIONAL

Masking

N/A

Allocation

N/A

Model

N/A

Primary Purpose

N/A

Number of Arms

1

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Published Research Related To This Trial

Clinical Features at Onset and Genetic Characterization of Pediatric and Adult Patients with TNF-α Receptor-Associated Periodic Syndrome (TRAPS): A Series of 80 Cases from the AIDA Network.

Carla Gaggiano, Antonio Vitale, Laura Obici...

https://pubmed.ncbi.nlm.nih.gov/32831641

Role of Colchicine Treatment in Tumor Necrosis Factor Receptor Associated Periodic Syndrome (TRAPS): Real-Life Data from the AIDA Network.

Antonio Vitale, Jurgen Sota, Laura Obici...

https://pubmed.ncbi.nlm.nih.gov/32565720

Anakinra and canakinumab for patients with R92Q-associated autoinflammatory syndrome: a multicenter observational study from the AIDA Network.

Carla Gaggiano, Donato Rigante, José Hernández-Rodríguez...

https://pubmed.ncbi.nlm.nih.gov/34527082

Drug survival of anakinra and canakinumab in monogenic autoinflammatory diseases: observational study from the International AIDA Registry.

Jurgen Sota, Donato Rigante, Rolando Cimaz...

https://pubmed.ncbi.nlm.nih.gov/33961014

Clinical profile and evolution of patients with juvenile-onset Behçet's syndrome over a 25-year period: insights from the AIDA network.

Jurgen Sota, Donato Rigante, Giuseppe Lopalco...

https://pubmed.ncbi.nlm.nih.gov/33835406

Biotechnological Agents for Patients With Tumor Necrosis Factor Receptor Associated Periodic Syndrome-Therapeutic Outcome and Predictors of Response: Real-Life Data From the AIDA Network.

Antonio Vitale, Laura Obici, Marco Cattalini...

https://pubmed.ncbi.nlm.nih.gov/34307404

Effectiveness and Safety of Biosimilars in Pediatric Non-infectious Uveitis: Real-Life Data from the International AIDA Network Uveitis Registry.

Maria Tarsia, Antonio Vitale, Carla Gaggiano...

https://pubmed.ncbi.nlm.nih.gov/38206518

The administration of methotrexate in patients with Still's disease, "real-life" findings from AIDA Network Still Disease Registry.

Piero Ruscitti, Jurgen Sota, Antonio Vitale...

https://pubmed.ncbi.nlm.nih.gov/37517110

Musculoskeletal manifestations in children with Behçet's syndrome: data from the AIDA Network Behçet's Syndrome Registry.

Carla Gaggiano, Anna Maselli, Petros P Sfikakis...

https://pubmed.ncbi.nlm.nih.gov/36881285