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Protocol on establishing a national disease registry-Swiss Pediatric Inflammatory Brain Disease Registry
Lorena Freya Hulliger1, Anne Tscherter1, Claudia Elisabeth Kuehni1
1Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.
Insights
A new Swiss registry, Swiss-Ped-IBrainD, is collecting data on rare pediatric-onset inflammatory brain diseases to improve understanding and research for affected children. This initiative aims to enhance patient care and facilitate access to clinical studies.
Area of Science:
- Neurology
- Pediatrics
- Rare Diseases
Background:
- Pediatric-onset inflammatory brain diseases are rare, life-threatening CNS disorders that are challenging to study.
- Patient registries are crucial for understanding the natural history of rare diseases and have advanced knowledge globally.
- The Swiss national pediatric-onset inflammatory brain disease registry (Swiss-Ped-IBrainD) was established to address knowledge gaps in Switzerland.
Purpose of the Study:
- To describe the epidemiology, demographics, diagnostics, management, and treatment of pediatric-onset inflammatory brain diseases in Switzerland.
- To promote research through knowledge exchange between study centers and by conducting national quality of life surveys.
- To facilitate patient access to national and international clinical studies.
Main Methods:
- A multicentric, population-based, observational cohort study involving 11 Swiss neuropediatric centers.
- Data collection is centralized, utilizing medical records as the primary source.
- Inclusion criteria encompass all patients diagnosed with pediatric-onset inflammatory brain disease since 2005, living and/or treated in Switzerland.
Main Results:
- All 11 participating centers are actively recruiting patients.
- As of May 1, 2023, 275 eligible participants have been identified.
- Informed consent has been obtained from 101 patients/families, with no refusals.
Conclusions:
- The Swiss-Ped-IBrainD registry is operational and actively recruiting patients across all participating centers.
- The registry is successfully identifying eligible participants, indicating feasibility and patient/family willingness to contribute.
- This initiative is poised to significantly advance the understanding and research of pediatric-onset inflammatory brain diseases in Switzerland.
Background:
Pediatric-onset inflammatory brain diseases are a group of potentially life-threatening central nervous system disorders. Overall, pediatric-onset inflammatory brain diseases are rare and therefore difficult to study. Patient registries are well suited to study the natural history of (rare) diseases and have markedly advanced the knowledge on pediatric-onset inflammatory brain diseases in other countries. Following their example, we established a national pediatric-onset inflammatory brain disease registry in Switzerland (Swiss-Ped-IBrainD).
Aims:
The Registry aims to describe epidemiology, demographics, diagnostics, management, and treatment, since these areas remain understudied in Switzerland. Additionally, we want to promote research by fostering the knowledge exchange between study centers and setting up studies such as national quality of life surveys. We further aim to facilitate the access to national and international studies for patients with a pediatric-onset inflammatory brain disease living and/or treated in Switzerland.
Methods:
The Swiss-Ped-IBrainD is a multicentric, population-based, observational cohort study (IRB number: 2019-00377) collaborating with 11 neuropediatric centers in Switzerland. Patient screening, information and recruitment is mainly conducted by the local principal investigators. The data collection is organized centrally by the Executive Office of the registry. The collected data is purely observational. Medical records are the primary data source. All patients who have been diagnosed with a pediatric-onset inflammatory brain disease since 2005 are eligible. We aim to include all pediatric-onset inflammatory brain disease patients living and/or treated in Switzerland who meet the inclusion criteria. Considering existing literature and our single-center experience we anticipate 300-400 eligible patients.
Status:
Currently, all 11 neuropediatric centers have been initiated and are recruiting. As of the first of May 2023, we have identified 275 eligible participants and obtained informed consent from 101 patients and/or families. None of the informed patients and/or families have refused participation.
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