What is the Swiss-Ped-IBrainD?
The Swiss-Ped-IBrainD is a medical registry. It contains information on the health of children with an inflammatory brain disease. The Swiss-Ped-IBrainD is a national registry and therefore reflects the situation of those affected in Switzerland.
Why do we need such a registry?
The Swiss-Ped-IBrainD is needed to improve the medical care of children with inflammatory brain diseases and to increase their quality of life. All medical information about children with inflammatory brain diseases converges in the registry. Thus, it is a good starting point for clarifying the following questions:
- How are children with inflammatory brain disease doing in Switzerland?
- How are they treated?
- Which therapies are effective?
- How do they and their families cope with the disease?
- What needs do they and their families have?
These and other questions can only be answered by a detailed and systematic acquisition and analysis of medical data. For this purpose, we collect health related information through various Swiss hospitals and evaluate it.
With the gained knowledge, we aim to optimize the treatment of children with inflammatory brain diseases.
This also means that the medical care may be better adapted to the needs of individual patients. This results in a “tailor-made” treatment approach for each affected child.
In addition, the registry facilitates access to ongoing therapeutic studies for affected children. It also promotes the exchange of knowledge between experts from different regions. This advances research in the field of inflammatory brain diseases.
Who runs the registry?
We run the registry; a group of neuropediatricians from all over Switzerland and scientific collaborators of the Institute of Social and Preventive Medicine (ISPM).