Cohort profile: the Swiss Cerebral Palsy Registry (Swiss-CP-Reg) cohort study.

BACKGROUND: Cerebral Palsy (CP) is a group of permanent disorders of movement and posture that follow injuries to the developing brain. It results in motor dysfunction and a wide variety of comorbidities like epilepsy; pain; speech, hearing and vision disorders; cognitive dysfunction; and eating and digestive difficulties. Central data collection is essential to the study of the epidemiology, clinical presentations, care, and quality of life of patients affected by CP. CP specialists founded the Swiss Cerebral Palsy Registry (Swiss-CP-Reg) in 2017. This paper describes the design, structure, aims and achievements of Swiss-CP-Reg and presents its first results. METHODS: Swiss-CP-Reg records patients of any age diagnosed with CP who are born, are treated, or live in Switzerland. It collects data from medical records and reports, from questionnaires answered by patients and their families, and from data linkage with routine statistics and other registries. The registry contains information on diagnosis, clinical presentation, comorbidities, therapies, personal information, family history, and quality of life. RESULTS: From August 2017 to August 2021, 546 participants (55% male, mean age at registration 8 years [interquartile range IQR: 5-12]), were enrolled in Swiss-CP-Reg. Most had been born at term (56%), were less than two years old at diagnosis (73%, median 18 months, IQR: 9-25), and were diagnosed with spastic CP (76%). Most (59%) live with a mild motor impairment (Gross Motor Function Classification System [GMFCS] level I or II), 12% with a moderate motor impairment (GMFCS level III), and 29% with a severe motor impairment (GMFCS level IV or V). In a subset of 170 participants, we measured intelligence quotient (IQ) and saw lower IQs with increasing GMFCS level. Swiss-CP-Reg has a strong interest in research, with four nested projects running currently, and many more planned. CONCLUSIONS: Swiss-CP-Reg collects and exchanges national data on people living with CP to answer clinically relevant questions. Its structure enables retrospective and prospective data collection and knowledge exchange between experts to optimise and standardise treatment and to improve the health and quality of life of those diagnosed with CP in Switzerland.

Epidemiology of Cerebral Palsy in Northeastern Switzerland.

PURPOSE: Cerebral palsy (CP) is the most common motor disability of childhood. Less is known about its prevalence and associated factors in Switzerland, so we aimed to fill this knowledge gap in one Swiss canton, evaluating the feasibility to build up a CP registry. METHODS: A retrospective review of medical records was undertaken. Children born during 1995 and 2009 in the canton of Saint Gallen diagnosed with CP were eligible for inclusion. RESULTS: A total of 140 patients formed the study cohort. The prevalence of CP was 0.19%, with 85% of children affected by spastic CP. CONCLUSIONS: The results of the present study were comparable with data of the Surveillance of Cerebral Palsy in Europe network. Moreover, this pilot study demonstrated the feasibility and usefulness of creating a registry of children affected by CP.

Forced-use therapy for children with cerebral palsy in the community setting: a single-blinded randomized controlled pilot trial.

OBJECTIVE: The aim of this study was to elucidate the feasibility, efficacy, and sustainability of a home-based, two-week, forced-use therapy (FUT) program for children with hemiplegic cerebral palsy (CP). METHODS: A single-blinded, randomized controlled design was chosen. The Melbourne Assessment of Unilateral Upper Limb Function (MA) was carried out at baseline, pretest, post-test, and follow-up at two weeks, three months, and 12 months. Additionally, a questionnaire was used to evaluate the clinical relevance and integration of FUT in the home setting. 23 children, ages six to 16 years, took part in the study and were randomized into either an intervention group (n=12, mean age 9.8 ± 3.5 years) or a control group ($n=$ 11, mean age 11.7 ± 3.7 years). The intervention consisted of constraint of the unaffected hand for six hours per day and promotion of different activities of daily living according to an age-related manual for the use of the non-constraint hand. RESULTS: Unpaired t-tests for the change in MA scores relative to the pre-test values showed no difference between the groups at any time point: post-test (p=0.304), two weeks (p=0.193), or three months (p=0.957). Improvements in Activities of Daily Living (ADLs) assessed by questionnaires were observed by 64% of parents of the intervention group. Fifty-five percent of parents stated that the FUT program was exhausting and only 45% indicated that they achieved constraint for 6 hours per day. CONCLUSION: Our results evaluating a home-based FUT program of 14 days show no statistically significant improvement of upper extremity function in children with CP. The lack of compliance and absence of structured exercises proved to be considerable pitfalls of the home-based FUT program. Therefore, future home based FUT concepts should put special emphasis on the close monitoring and support of children and their families, as well as the integration of structured exercise sessions.