CAPS-CARE Survey — International survey on catastrophic antiphospholipid syndrome
Despite the recent revision of the antiphospholipid syndrome (APS) classification criteria in 2023, the criteria relating to catastrophic antiphospholipid syndrome (CAPS) remain outdated, and numerous uncertainties persist in clinical practice. These often critical situations require rapid therapeutic decisions, even though the available criteria do not always reflect the complexity of the cases encountered.
To better understand these challenges, we have developed a short REDCap questionnaire aimed at gathering the experience and perception of clinicians involved in the management of these patients — nephrologists, internists, intensivists, and rheumatologists. The objective is to obtain a multidisciplinary overview of current practices and to identify areas of uncertainty that could guide future developments in diagnostic frameworks and management recommendations.
Given the rarity of CAPS and the lack of data from real-world practice, this project aims to collect clinical experiences on a broad international scale.
Participation is open to all specialist clinicians, regardless of whether they have previously managed CAPS cases. The questionnaire takes approximately 15 to 20 minutes to complete.
Steering committee:
- Lucas Jacobs, M.D. (HUB Erasme, ULB)
- Maxime Taghavi, M.D. (CHU Brugmann, ULB)
- Johann Morelle, M.D., PhD. (CHR Namur — UCLouvain)
- Fabio Taccone, M.D., PhD. (HUB Erasme, ULB)
- Filippo Annoni, M.D., PhD. (HUB Erasme, ULB)
- Farah Tamirou, M.D., PhD. (Cliniques universitaires Saint-Luc — UCLouvain)
- Frédéric Houssiau, M.D., PhD. (Cliniques universitaires Saint-Luc — UCLouvain)
- Frédéric Vandergheynst, M.D., PhD. (HUB Erasme, ULB)
- Nader Wauters, M.D. (CHU Tivoli, ULB)
