PEDNET-LC – telemedical platform for young long-Covid patients

PEDNET-LC aims to create a Germany-wide network of clinical and scientific institutions that will enable state-of-the-art, tailored and sustainable care for children and adolescents with Long COVID (LC) and similar conditions. The FORWISS Institute at the University of Passau is also involved in the project and has now received a grant of €620,300 from the Federal Ministry of Health.

‘We are very pleased about the support from the Federal Ministry of Health and are now looking forward with confidence to the start and further progress of the project, which will make a decisive contribution to improving the care of children and adolescents with Long COVID,’ says Dr Michael Niedermeier, managing director of the FORWISS institute.

Data protection-compliant, efficient, cross-institutional and cross-sectoral telemedical communication is essential for the quality and cost-effectiveness of medical care because it can close information gaps, avoid redundant care processes and establish optimal care synergies. Therefore, a multi-centre, cross-sectoral, telemedical communication platform is also to be set up for the PEDNET-LC network. This is now being developed at the FORWISS Institute of the University of Passau as part of the 6th work package ‘Telemedicine Infrastructure’ (WP6). It will establish sustainable and exemplary multifunctional communication structures for the treatment of chronically and complexly ill children that are suitable for PEDNET-LC. This includes options for telemedical exchange through a communication platform to connect patients with LCs with medical experts throughout Germany, thus ensuring the best possible care. This is intended to counteract the currently significant inter-institutional and cross-sectoral communication deficits in the current care structures, which are based on insufficient technical communication options.

In addition to the University of Passau, the Paediatric Clinic Passau and BVKJ Service GmbH are involved in the development of WP6. They currently expect the first medical facilities to be connected to the new telemedical platform by the end of 2026. All project partners plan to implement it by the end of 2028. ‘This project enables us to further develop our expertise in the field of telemedicine and is therefore perfectly aligned with the initiatives of the University of Passau in the context of the Medical Campus of Lower Bavaria’, summarises Professor Tomas Sauer, head of the FORWISS Institute.

The aim of the nationwide PEDNET-LC project is to improve LC-related care for young patients, including those who are seriously ill, housebound or bedridden, as well as research and health literacy, in order to identify those affected at an early stage and enable them to participate in education and training and to evaluate costs. To achieve this, 20 specialised, interdisciplinary and multiprofessional care centres are to be established in 15 federal states, which will organise care in their state and at the same time work closely together. They will establish a common infrastructure for communication and research, conduct target group-specific clinical studies and evaluation studies, analyse linked registry and health insurance data, and develop age-adjusted and gender-sensitive standard operating procedures and care guidelines. In addition to the diagnostic-therapeutic focus, disease pattern-related interventions are to be implemented in schools and best practice approaches are to be shared across the board.

Each of these centres is to be managed by a department of paediatrics in cooperation with institutions of child and adolescent psychiatry, psychosomatics and psychotherapy and is also to work closely with parents, representatives of those affected, social paediatric centres, general practitioners, therapists, social and palliative care teams, health insurance companies, politics and public institutions such as schools.

All results generated by the project will be disseminated to the scientific community, the general public, healthcare providers and policy makers. This will enable comprehensive, sustainable, harmonised, standardised and tailored care for Long COVID patients.

PEDNET-LC is coordinated by the MRI Chronic Fatigue Centre for Young People (MCFC) at the TUM Klinikum in Munich in collaboration with an interdisciplinary steering committee and advised by an international scientific committee.