Pediatric onset MS and other IBrainDs are severe diseases affecting children and adolescents in a period of essential brain development. This possibly leads to a variety of focal neurological deficits as well as early cognitive impairment. In turn, the cognitive impairment may impact school performance and vocational achievements.
Timely diagnosis and treatment initiation as well as individually tailored management are important for a favorable disease course. However, the diagnosis of the different IBrainDs can be challenging, especially in young children, since their first acute inflammation is often accompanied by unspecific symptoms common to all IBrainDs. A systematic assessment of similarities and differences between clinical signs, symptoms, and diagnostic workup of different IBrainDs will enable faster and more reliable diagnosis.
Furthermore, neither epidemiological data nor information on health care management and disease outcome of pediatric IBrainD patients exist in Switzerland. Therefore, we are currently building a national registry focusing on collecting extensive information on the diagnosis, disease course, and treatment of the included diseases. These data will come together to generate an accurate, high resolving image showing which areas of the diseased children’s lives are affected and to what extent.
However, the registry is not just a simple data collection, it is a dynamic structure that promotes the communication and collaboration of the participating centers. It fosters a network of specialists in the field, who will not only help to gather knowledge but also to implement the acquired knowledge in the best interest of their patients. The registry thus addresses the increasing requests for medical trial participation and promotes the exchange with existing adult registries (e.g., Swiss MS Registry). Ultimately, the registry will improve the medical care as well as the quality of life of children suffering from an IBrainD in Switzerland.
The registry was founded in 2020 and is located at the Institute of Social and Preventive Medicine at the University of Bern. The Swiss Ped IBrainD is supported by peer-reviewed and non peer-reviewed third party funds.
www.swiss-ped-ibraind.ch
www.ispm.unibe.ch