Actively Recruiting
Swiss Pediatric Inflammatory Brain Disease Cohort Study National Patient Registry for Children and Adolescents
Led by University of Bern · Updated on 2024-12-16
500
Participants Needed
13
Research Sites
N/A
Total Duration
On this page
Sponsors
U
University of Bern
Lead Sponsor
S
Schweizerische Multiple Sklerose Gesellschaft
Collaborating Sponsor
AI-Summary
What this Trial Is About
This research aims to build a national registry in Switzerland for children and adolescents diagnosed with various inflammatory brain diseases (IBrainDs), such as multiple sclerosis and autoimmune encephalitis. These diseases affect brain development and can cause neurological and cognitive challenges impacting school and life achievements. The registry addresses the need for timely diagnosis, better disease understanding, and improved care by collecting comprehensive data on pediatric IBrainD cases starting from 2005. The registry collects information from multiple pediatric and neurological centers across Switzerland, including hospitals in Bern, Basel, Geneva, and others, with plans to expand further. It gathers data from medical records, physician and family reports, questionnaires, and routine statistics without altering usual diagnosis or treatment. The study includes patients diagnosed before age 18 and tracks their clinical course, treatments, education, and outcomes over time. Participants' data include personal details, diagnosis, symptoms, hospitalizations, medication changes, MRI and laboratory results, and neurological assessments, collected from diagnosis until adulthood and beyond. The registry supports long-term monitoring and research collaboration, aiming to enhance treatment and quality of life for affected children. Participation involves consent and data sharing but does not require extra procedures beyond standard care.
CONDITIONS
Brief Title
Swiss Pediatric Inflammatory Brain Disease Registry (Swiss-Ped-IBrainD)
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Patients living or treated in Switzerland diagnosed with an inflammatory brain disease from 2005 onward
- Disease onset before age 18 years
- Written informed consent by patients or legal representatives
- Diagnosis includes optic neuritis, transverse myelitis, acute disseminated encephalomyelitis, multiple sclerosis, neuromyelitis optica spectrum disorders
- Includes autoimmune encephalitis types such as anti-NMDA-R, anti-GAD65, anti-AMPAR, anti-Lgi-1, anti-CASPR-2, anti-GABAR, onconeuronal antibody associated encephalitis
- Includes Hashimoto encephalopathy, CNS vasculitis, CNS sarcoidosis, CNS lupus, Rasmussen encephalitis
You will not qualify if you...
- Neurological symptoms caused by infectious diseases of the central nervous system
- Genetic or metabolic causes of central demyelinating diseases
- Neurological symptoms due to Guillain-Barré Syndrome
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person)
Duration - Up to 80 years
Participants who have been diagnosed with an inflammatory brain disease are monitored over time through collection of medical data including diagnosis, clinical course, treatment, education, social aspects, and outcomes.
Ongoing data collection during routine medical consultations and questionnaires
Trial Site Locations
Total: 13 locations
1
Kantonsspital Aarau
Aarau, Canton of Aargau, Switzerland, 5001
Actively Recruiting
2
Children's Hospital of Eastern Switzerland
Sankt Gallen, Canton of St. Gallen, Switzerland, 9000
Actively Recruiting
3
University Children's Hospital Lausanne (CHUV)
Lausanne, Canton of Vaud, Switzerland, 1011
Actively Recruiting
4
Kantonsspital Winterthur
Winterthur, Canton of Zurich, Switzerland, 8400
Actively Recruiting
5
Pediatric Institute of Southern Switzerland, Ospedale San Giovanni
Bellinzona, Canton Ticino, Switzerland, 6500
Actively Recruiting
6
Kantonsspital Graubünden
Chur, Kanton Graubünden, Switzerland, 7000
Actively Recruiting
7
University Children's Hospital Basel, UKBB
Basel, Switzerland, 4031
Actively Recruiting
8
University Children's Hospital, Inselspital Bern
Bern, Switzerland, 3010
Actively Recruiting
9
Institute of Social and Preventive Medicine, University of Bern
Bern, Switzerland, 3012
Actively Recruiting
10
Hôpital Fribourgeois - Freiburger Spital
Fribourg, Switzerland, 1752
Not Yet Recruiting
11
University Hospitals of Geneva (HUG)
Geneva, Switzerland, 1211
Actively Recruiting
12
Kinderspital Zentralschweiz
Lucerne, Switzerland, 6000
Actively Recruiting
13
University Children's Hospital Zurich
Zurich, Switzerland, 8032
Actively Recruiting
Research Team
L
Lorena F Hulliger, MSc
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
1
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