Swiss Pediatric Inflammatory Brain Disease Registry (Swiss-Ped-IBrainD)

Condition(s) studied

Study summary

The Swiss-Ped-IBrainD is a national patient registry that collects information on diagnosis, symptoms, treatment, and follow-up of pediatric patients with an inflammatory brain disease in Switzerland. It was first implemented in 2020 in the pediatric clinic of the university hospital in Bern. Further centers all over Switzerland opened for recruitment after that: Aarau, Basel, Bellinzona, Chur, Geneva, Lausanne, Lucerne, St. Gallen, Winterthur and Zurich. The center in Fribourg is expected open for recruitment in 2025. The registry provides data for national and international monitoring and research. It supports research on inflammatory brain diseases in Switzerland and the exchange of knowledge between clinicians, researchers, and therapists. The registry aims to improve the treatment of children with inflammatory brain diseases and optimizing their health care and quality of life.

Eligibility

Primary outcome measure(s)

• Personal data — At registration (Life-long; Up to 80 years)
  Registering patient's personal data
• Diagnosis — Until reaching of adulthood (0 to 18 years)
  Diagnosis of IBrainD
• Age at diagnosis — Until reaching of adulthood (0 to 18 years)
  Age at diagnosis (months and years)
• First symptoms — Until reaching of adulthood (0 to 18 years)
  Symptoms before diagnosis
• Age at first symptoms — Until reaching of adulthood (0 to 18 years)
  Age at first symptoms
• Diagnostic delay — Until reaching of adulthood (0 to 18 years)
  Time elapsed between symptom-onset and diagnosis (days)
• Hospitalization — Until reaching of adulthood (0 to 18 years)
  Length of hospitalization at diagnosis or during a relapse (days)
• Rehabilitation — Until reaching of adulthood (0 to 18 years)
  Length and type of rehabilitation at diagnosis or during a relapse (days)
• Death date — Life-long; Up to 80 years
  Date of death
• Death cause — Life-long; Up to 80 years
  Cause of death
• Change in EDSS — Until reaching of adulthood (0 to 18 years)
  EDSS change over time
• Change in Neurostatus — Until reaching of adulthood (0 to 18 years)
  Neurostatus change over time
• Change in medication — Until reaching of adulthood (0 to 18 years)
  Change of IBrainD medication over time
• Change in Education — Until reaching of adulthood (0 to 18 years)
  Evolution of education over time
• Change in MRI data — Until reaching of adulthood (0 to 18 years)
  Change in number of CNS lesions
• Change in MRI data — Until reaching of adulthood (0 to 18 years)
  Change in activity of CNS lesions
• Change in laboratory test data — Until reaching of adulthood (0 to 18 years)
  Change in diagnostic markers
• Electrophysiological testing — Until reaching of adulthood (0 to 18 years)
  Assessment if the patient did undergo electrophysiological testing.

Trial sites (13)

More University of Bern trials in Switzerland

Other trials for the same condition