National registry for cerebral palsy in Switzerland
Swiss Cerebral Palsy Registry
This study is collecting information about people with cerebral palsy in Switzerland to help improve their treatment and quality of life.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 15000 (estimated) |
| Ages | 0 Years and up |
| Sex | All |
| Sponsor | University of Bern Academic / other |
| Locations | 12 sites (Aarau and 11 other locations) |
| Trial ID | NCT04992871 on ClinicalTrials.gov |
What this trial studies
The Swiss Cerebral Palsy Registry collects comprehensive data on diagnosis, symptoms, treatment, and follow-up of individuals with cerebral palsy (CP) across Switzerland. Initiated in 2017, it aims to establish a representative cohort of children, adolescents, and adults with CP to enhance understanding of the condition's prevalence, risk factors, and clinical profiles. The registry facilitates research and knowledge exchange among clinicians, researchers, and therapists, ultimately striving to improve treatment and quality of life for those affected by CP.
Who should consider this trial
Good fit: Ideal candidates include individuals diagnosed with cerebral palsy who are born, treated, or currently residing in Switzerland and can provide informed consent.
Not a fit: Patients with conditions such as pure muscular hypotonia or other progressive neurological diseases may not benefit from this registry.
Why it matters
Potential benefit: If successful, this registry could lead to improved treatment strategies and enhanced quality of life for individuals with cerebral palsy.
How similar studies have performed: Other national registries for cerebral palsy have shown success in improving care and understanding of the condition, indicating that this approach is promising.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Who were diagnosed with CP, confirmation of the diagnosis at the age of 5 years is required * Who are born, treated for CP or living in Switzerland, and * Who gave informed consent Exclusion Criteria: * Pure muscular hypotonia * Neurometabolic diseases (e.g. neuronal storage diseases, leukodystrophies) * Other progressive neurological diseases (e.g. spinocerebellar ataxias, hereditary spastic paraplegia, Rett syndrome, epileptic encephalopathy)
Where this trial is running
Aarau and 11 other locations
- Aarau Cantonal Hospital — Aarau, Switzerland (Recruiting)
- University Children's Hospital Basel, UKBB — Basel, Switzerland (Recruiting)
- Pediatric Institute of Southern Switzerland, Ospedale San Giovanni — Bellinzona, Switzerland (Recruiting)
- Institute of Social and Preventive Medicine (ISPM), University of Bern — Bern, Switzerland (Recruiting)
- University Children's Hospital Bern, Inselspital — Bern, Switzerland (Recruiting)
- Zentrum für Entwicklungsförderung und pädiatrische Neurorehabilitation — Biel, Switzerland (Recruiting)
- University Hospitals of Geneva — Geneva, Switzerland (Recruiting)
- University Children's hospital Lausane, CHUV — Lausanne, Switzerland (Recruiting)
- Lucerne Cantonal Hospital — Lucerne, Switzerland (Recruiting)
- Children's Hospital of Eastern Switzerland — Sankt Gallen, Switzerland (Recruiting)
- Zentrum für Kinder mit Sinnes- und Körperbeeinträchtigung — Solothurn, Switzerland (Recruiting)
- University Children's Hospital Zurich — Zurich, Switzerland (Recruiting)
Study contacts
- Principal investigator: Claudia E Kuehni, Prof. MD — Institute of Social and Preventive Medicine (ISPM), University of Bern
- Study coordinator: Claudia E Kuehni, Prof. MD
- Email: swiss-cp-reg.ispm@unibe.ch
- Phone: +41 31 684 35 07
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.