Swiss Cerebral Palsy Registry

Condition(s) studied

Study summary

The Swiss-CP-Reg is a national patient registry that collects information on diagnosis, symptoms, treatment and follow-up of patients with cerebral palsy (CP) in Switzerland. It was first implemented in 2017 in the paediatric clinics in Basel, Bellinzona, Bern, Geneva, Lausanne, St. Gallen and Zurich. It is currently extended to all Swiss clinics and medical practices and adults will be invited to join the register in the coming years. The registry provides data for national and international monitoring and research. It supports research on CP in Switzerland and the exchange of knowledge between clinicians, researchers and therapists, with the goal to improve the treatment of children and adults with CP and optimizing their health and quality of life.

Eligibility

Primary outcome measure(s)

• Personal data — At diagnosis (age 0-5 years)
  Registering patients personal data
• Change in date of registration — Baseline medical information, follow-up data collection at regular intervals (at diagnosis, at age of 5, 10 and 15 years, and at the time of transition to adult care (18±2 years))
  Change in date of last consultation at physician for data collection
• Birth history neonatal care — At diagnosis (age 0-5 years)
  Maternal birth history
• Cause of change in vital status — Baseline medical information, follow-up data collection at regular intervals (at diagnosis, at age of 5, 10 and 15 years, and at the time of transition to adult care (18±2 years))
  what caused a change in patients vital status
• Neonatal care — At diagnosis (age 0-5 years)
  Neonatal care
• Age — At diagnosis (age 0-5 years)
  Age at diagnosis
• Change in classification of CP — Baseline medical information, follow-up data collection at regular intervals (at diagnosis, at age of 5, 10 and 15 years, and at the time of transition to adult care (18±2 years))
  Change in CP classification according to SCPE decision tree
• Change in gross motor function — Baseline medical information, follow-up data collection at regular intervals (at diagnosis, at age of 5, 10 and 15 years, and at the time of transition to adult care (18±2 years))
  Change in classification of gross motor function
• Change in fine motor function — follow-up data collection at regular intervals (at age of 5, 10 and 15 years, and at the time of transition to adult care (18±2 years))
  Change in classification of fine motor function
• Postneonatal CP — At diagnosis (age 0-5 years)
  Classification of postneonatal CP
• Change in associated syndromes — Baseline medical information, follow-up data collection at regular intervals (at diagnosis, at age of 5, 10 and 15 years, and at the time of transition to adult care (18±2 years))
  Change in classification of associated syndromes using ICD code
• Change of congenital anomalies — Baseline medical information, follow-up data collection at regular intervals (at diagnosis, at age of 5, 10 and 15 years, and at the time of transition to adult care (18±2 years))
  Change in classification of congenital anomalies using ICD code
• Change of brain malformation — Baseline medical information, follow-up data collection at regular intervals (at diagnosis, at age of 5, 10 and 15 years, and at the time of transition to adult care (18±2 years))
  Change in classification of brain malformation using ICD code
• Change in genetic syndromes — Baseline medical information, follow-up data collection at regular intervals (at diagnosis, at age of 5, 10 and 15 years, and at the time of transition to adult care (18±2 years))
  Change in analysis results on genetic mutation
• Change in neuroimaging — Baseline medical information, follow-up data collection at regular intervals (at diagnosis, at age of 5, 10 and 15 years, and at the time of transition to adult care (18±2 years))
  Registration of change in neuro images
• Change in anthropometrics — follow-up data collection at regular intervals (at age of 5, 10 and 15 years, and at the time of transition to adult care (18±2 years))
  Registration of change in anthropometric data
• Change in sensory difficulties — follow-up data collection at regular intervals (at age of 5, 10 and 15 years, and at the time of transition to adult care (18±2 years))
  Registration of change in sensory capability
• Change in nutrition — follow-up data collection at regular intervals (at age of 5, 10 and 15 years, and at the time of transition to adult care (18±2 years))
  Registration of change in feeding habits
• Change in speech — follow-up data collection at regular intervals (at age of 5, 10 and 15 years, and at the time of transition to adult care (18±2 years))
  Change in classification of verbal communication using VSS
• Change in communication — follow-up data collection at regular intervals (at age of 5, 10 and 15 years, and at the time of transition to adult care (18±2 years))
  Change in classification of communication using CFCS
• Change in comorbidities — follow-up data collection at regular intervals (at age of 5, 10 and 15 years, and at the time of transition to adult care (18±2 years))
  Registration of change in comorbidities
• Change of hip — follow-up data collection at regular intervals (at age of 5, 10 and 15 years, and at the time of transition to adult care (18±2 years))
  Hip surveillance: registration of change in hip-dislocation
• Change of scoliosis — follow-up data collection at regular intervals (at age of 5, 10 and 15 years, and at the time of transition to adult care (18±2 years))
  Assessing change in scoliosis using Cobb Winkel
• Change in surgery — follow-up data collection at regular intervals (at age of 5, 10 and 15 years, and at the time of transition to adult care (18±2 years))
  Registering changes in surgery history
• Change in treatments — follow-up data collection at regular intervals (at age of 5, 10 and 15 years, and at the time of transition to adult care (18±2 years))
  Registering changes in treatments
• Change in therapies — follow-up data collection at regular intervals (at age of 5, 10 and 15 years, and at the time of transition to adult care (18±2 years))
  Registering changes in therapies
• Changes in medical equipment — follow-up data collection at regular intervals (at age of 5, 10 and 15 years, and at the time of transition to adult care (18±2 years))
  Registering changes in use of medical equipment
• Change in ancillary service — follow-up data collection at regular intervals (at age of 5, 10 and 15 years, and at the time of transition to adult care (18±2 years))
  Registering changes in use of ancillary service
• Change in mobility — follow-up data collection at regular intervals (at age of 5, 10 and 15 years, and at the time of transition to adult care (18±2 years))
  Registering changes in mobility
• Changes in behavior — follow-up data collection at regular intervals (at age of 5, 10 and 15 years, and at the time of transition to adult care (18±2 years))
  Assessing changes in behavior using scales
• Changes in academic info — follow-up data collection at regular intervals (at age of 5, 10 and 15 years, and at the time of transition to adult care (18±2 years))
  Registering changes in info on academic education
• Changes in family history — follow-up data collection at regular intervals (at age of 5, 10 and 15 years, and at the time of transition to adult care (18±2 years))
  Registering changes in info on health of family members
• Changes in socio economics — follow-up data collection at regular intervals (at age of 5, 10 and 15 years, and at the time of transition to adult care (18±2 years))
  Registering changes in info on parents socio-economic background
• Changes in epilepsy — Baseline medical information, follow-up data collection at regular intervals (at diagnosis, at age of 5, 10 and 15 years, and at the time of transition to adult care (18±2 years))
  Registration changes in epilepsy
• Questionnaire data — 5-80 years
  Questionnaires focusing on specific research questions (Perinatal history, health related questions, health behavior, quality of life, participation, needs, concerns)
• Change in cognition — follow-up data collection at regular intervals (at age of 5, 10 and 15 years, and at the time of transition to adult care (18±2 years))
  Assessing changes in mental ability using tests and school typ

Trial sites (12)

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