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Development and implementation of the International AIDA Network Castleman's disease registry
Antonio Vitale1,2, Jessica Sbalchiero1,2, Valeria Caggiano1,2
1Research Center of Systemic Autoinflammatory Diseases and Behçet's Disease Clinic, Department of Medical Sciences, Surgery and Neurosciences, University of Siena, Siena, Italy.
Frontiers in Medicine
|September 19, 2025
Summary
Castleman's disease (CD) is a rare disorder with limited understanding. Establishing a dedicated CD registry via the AutoInflammatory Disease Alliance (AIDA) Network is crucial for advancing research and improving patient care.
Area of Science:
- Rare diseases
- Hematology
- Immunology
Background:
- Castleman's disease (CD) encompasses unicentric and multicentric forms (MCD), with MCD presenting more severe systemic symptoms.
- MCD subtypes include HHV-8 associated, POEMS-associated, and idiopathic MCD (iMCD), with iMCD further classified into iMCD-TAFRO and iMCD-NOS.
- Current knowledge of CD is limited due to its rarity, relying on small case series, hindering comprehensive understanding of clinical details, histology, prognosis, and treatment.
Purpose of the Study:
- To highlight the need for a dedicated Castleman's disease registry.
- To leverage the AutoInflammatory Disease Alliance (AIDA) Network for robust CD research.
- To facilitate multidisciplinary collaboration for improved patient management.
Main Methods:
- Proposing the development of an online data-sharing registry for Castleman's disease.
- Utilizing the established infrastructure and international reach of the AIDA Network.
- Encouraging multidisciplinary and integrated collaboration among healthcare professionals.
Main Results:
- A registry will enable the recruitment of a sufficient patient cohort for comprehensive research.
- The AIDA Network infrastructure supports robust data collection and analysis.
- Integrated collaboration will enhance diagnostic, clinical, and therapeutic strategies for CD patients.
Conclusions:
- A dedicated CD registry is essential for advancing research and understanding of this rare disease.
- The AIDA Network provides a viable platform for establishing and managing such a registry.
- Enhanced research and collaboration through the registry will ultimately improve outcomes for patients with Castleman's disease.
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