Pediatric Network for Medical Care and Research of COVID-19 Sequelae (PASC), Similar Post-acute Infection and Vaccination Syndromes (PAIVS), and ME/CFS (PEDNET-LC)

PEDNET-LC, presented by Prof. Dr. Uta Behrends, is a nationwide research projects in Germany focused on improving pediatric care and research for Post-Acute Sequelae of COVID-19 (PASC), Post-acute Infection and Vaccination Syndromes (PAIVS), and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The project aims to establish a sustainable, interdisciplinary, and multi-professional network that delivers high-quality clinical care while advancing research into these complex chronic conditions. Beyond its immediate focus, PEDNET-LC serves as a model for developing integrated healthcare structures for other chronic diseases. The network consists of a national academy, 20 regional Comprehensive Care Centers, and collaborating partners across Germany. It also includes health education and screening programs in schools, a multicenter research infrastructure, registry-based studies, evaluations of patient, parent, and healthcare professional perspectives, and health economic analyses using linked data. Cross-cutting elements such as project management, patient and public involvement, and compliance with data protection regulations support all activities. Governance is provided through interdisciplinary steering and advisory boards working closely with pediatric healthcare providers, researchers, health insurers, professional societies, patient organizations, and industry partners. A central component is the PEDNET-LC Academy, which synthesizes scientific evidence and translates it into practical resources, including factsheets, handbooks, standard operating procedures, clinical guidelines, educational programs, workshops, lectures, newsletters, journal clubs, and PhD clubs. The clinical network promotes standardized, harmonized care across inpatient and outpatient settings through interdisciplinary diagnostics and treatment, supported by telemonitoring as well as social, medical, and palliative care services. Weekly expert case discussions and clinical update meetings facilitate continuous knowledge exchange. Research activities are supported by the PAIVS-MECFS Registry and Biobanking Study, which collect clinical data and biological samples in healthcare settings and through home collection kits. Registry-based studies examine risk factors, symptom patterns, laboratory findings, imaging, functional assessments, treatments, healthcare utilization, self-management, disease progression, and health-related quality of life. Planned future research will explore genetic susceptibility and gather perspectives from primary and secondary healthcare professionals and school personnel to further strengthen care pathways and understanding of these conditions.