BMG-Versorgungsstudie: PEDNET-LC

Prof. Dr. Uta Behrends provided a detailed update on the healthcare research project PEDNET-LC—a pediatric network dedicated to the care and research of Long COVID, post-acute infection syndromes, post-vaccination syndromes, and ME/CFS in children and adolescents. PEDNET-LC is one of four projects in the field of Long COVID healthcare research for children and adolescents funded by the Federal Ministry of Health (BMG) with a total of 45 million Euros. Patient organisations play a central role in all these projects. At the core of PEDNET-LC is the establishment of a nationwide, interdisciplinary, and participatory care and research network comprising 20 Comprehensive Care Centers (CCCs), rehabilitation and pain clinics, research infrastructure, a biobank, social pediatric centers, health insurance providers, associations, and patient organisations. PEDNET-LC is intended to serve as a model for how complex chronic conditions that limit social participation can be addressed nationwide and across different sectors of the healthcare system. Within the care network, standardised diagnostic procedures and therapeutic recommendations are implemented at the CCCs, complemented by telemonitoring, follow-up care, specialised outpatient palliative care, and case conferences. The objective is to ensure consistent, evidence-based, and practice-oriented care. Regarding the research component, Prof. Dr. Behrends outlined the integrated concept for patient registries and biosample collection. Planned and ongoing activities include registry analyses, linkages with health insurance data, prospective clinical trials, evaluation studies on diagnostic methods and interventions, as well as translational research. The perspectives of patients, parents, medical staff, and school personnel are also being investigated. Overall, she expressed confidence that—through close collaboration among researchers, healthcare providers, and patients—significant progress in diagnostics and care could be achieved in the coming years.