Lessons from the catastrophic antiphospholipid syndrome (CAPS) registry

Area of Science:

• Rheumatology
• Immunology
• Internal Medicine

Background:

• Catastrophic Antiphospholipid Syndrome (CAPS) is a rare but severe variant of Antiphospholipid Syndrome (APS).
• Its low incidence poses significant challenges for systematic research and understanding.
• The potentially lethal nature of CAPS underscores its clinical importance.

Purpose of the Study:

• To establish an international registry for collecting comprehensive data on patients with catastrophic APS.
• To facilitate systematic study and enhance knowledge of CAPS through data analysis.
• To provide a freely accessible resource for researchers studying catastrophic APS.

Main Methods:

• Creation of the CAPS Registry in 2000 by the European Forum on Antiphospholipid Antibodies.
• Global collection of published case reports and newly diagnosed cases of catastrophic APS.
• Documentation of clinical, laboratory, and therapeutic data for over 300 registered patients.

Main Results:

• The CAPS Registry currently holds data for over 300 fully registered patients worldwide.
• The registry compiles extensive clinical, laboratory, and therapeutic information.
• The registry is accessible online for consultation.

Conclusions:

• The CAPS Registry is a valuable resource for studying the rare and severe catastrophic variant of APS.
• Periodic analysis of registry data is expected to significantly advance the understanding of CAPS.
• This international collaboration aims to improve clinical management and outcomes for patients with catastrophic APS.