Swiss Cerebral Palsy Registry collecting health data from children and adults with cerebral palsy in Switzerland

What this Trial Is About

Researchers are collecting detailed information about people with cerebral palsy CP in Switzerland through the Swiss-CP-Reg, a national patient registry started in 2017. This registry gathers data on diagnosis, symptoms, treatments, and follow-up care for children, adolescents, and adults with CP. The goal is to better understand CPs prevalence, risk factors, clinical profiles, and needs, ultimately aiming to improve treatment and quality of life. The registry involves multiple Swiss clinics and medical practices and invites all people diagnosed with CP who were born, treated, or live in Switzerland to participate. Data collected include medical records, questionnaires for patients and families, and links to routine statistics and medical registries. Follow-up data are gathered regularly at diagnosis, ages 5, 10, 15, and at the transition to adult care around age 18. The registry also supports clinical research and international collaboration to enhance knowledge exchange and therapeutic approaches. Participants provide informed consent and are followed over time with regular updates on their medical status, motor function, comorbidities, treatments, and quality of life. The registry collects comprehensive information such as birth history, diagnosis details, therapies, surgeries, and socio-economic factors. Data collection includes questionnaires on health, education, and social participation. The study continually analyzes and publishes findings to support better care for people with CP in Switzerland.

Swiss Cerebral Palsy Registry