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The Ped-APS Registry: the antiphospholipid syndrome in childhood
1Department of Allergology, Rheumatology and Clinical Immunology, University Children's Hospital, University Medical Center Ljubljana, Ljubljana, Slovenia. tadej.avcin@kclj.si
Insights
The Ped-APS Registry collects data on childhood antiphospholipid syndrome (APS). This international effort aims to improve understanding and treatment of APS in children through multicenter studies.
Area of Science:
- Pediatric Rheumatology
- Autoimmune Diseases
- Thrombosis Research
Background:
- Antiphospholipid syndrome (APS) is increasingly recognized in pediatric autoimmune and non-autoimmune diseases.
- Studying childhood APS is challenging due to low prevalence and heterogeneity.
- The European Forum on Antiphospholipid Antibodies and the Juvenile Systemic Lupus Erythematosus Working Group initiated the Ped-APS Registry.
Purpose of the Study:
- To foster and conduct multicenter, controlled studies on pediatric APS patients.
- To establish a standardized data collection for children with antiphospholipid antibodies (aPL)-related thrombosis.
- To facilitate systematic research into childhood APS.
Main Methods:
- Initiated an international registry for pediatric APS patients (Ped-APS Registry) in 2004.
- Collaborative project involving European research groups.
- Standardized collection of clinical, laboratory, and therapeutic data.
Main Results:
- The registry currently documents data from 133 children with aPL-related thrombosis across 14 countries.
- Established a standardized dataset for pediatric APS patients.
- Facilitated international collaboration in childhood APS research.
Conclusions:
- The Ped-APS Registry is a crucial resource for studying pediatric APS.
- Future research priorities include prospective enrollment, adult vs. pediatric APS comparison, genetic risk factors, and non-thrombotic manifestations.
- The registry aims to improve the diagnosis and management of APS in children.
Abstract:
In recent years, antiphospholipid syndrome (APS) has been increasingly recognised in various paediatric autoimmune and nonautoimmune diseases, but the relatively low prevalence and heterogeneity of APS in childhood made it very difficult to study in a systematic way. The project of an international registry of paediatric patients with APS (the Ped-APS Registry) was initiated in 2004 to foster and conduct multicentre, controlled studies with large number of paediatric APS patients. The Ped-APS Registry is organised as a collaborative project of the European Forum on Antiphospholipid Antibodies and Juvenile Systemic Lupus Erythematosus Working Group of the Paediatric Rheumatology European Society. Currently, it documents a standardised clinical, laboratory and therapeutic data of 133 children with antiphospholipid antibodies (aPL)-related thrombosis from 14 countries. The priority projects for future research of the Ped-APS Registry include prospective enrollment of new patients with aPL-related thrombosis, assessment of differences between the paediatric and adult APS, evaluation of proinflammatory genotype as a risk factor for APS manifestations in childhood and evaluation of patients with isolated nonthrombotic aPL-related manifestations.
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