Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
Get a concise snapshot of the trial, including recruitment status, study phase, enrollment targets, and key timeline milestones.
RECRUITING
15000 participants
OBSERVATIONAL
2017-06-19
2071-01-31
Brief Summary
Review the sponsor-provided synopsis that highlights what the study is about and why it is being conducted.
Related Clinical Trials
Explore similar clinical trials based on study characteristics and research focus.
Canadian CP Registry - Registre Canadien de la Paralysie Cérébrale
NCT03353194
EARLY Intervention in Parent-professional Cooperation in Cerebral Palsy
NCT06180291
Observational Study for the Epidemiology of Cerebral Palsy in Italy
NCT06813586
Prevalence of Incontinence and Risk Factors in Children With Cerebral Palsy
NCT02368262
Prospective Database Registry Study of Scoliosis in Children With Cerebral Palsy
NCT00680264
Detailed Description
Dive into the extended narrative that explains the scientific background, objectives, and procedures in greater depth.
CP is the most common cause of physical disability in children in Switzerland and it is important that the investigators gain a better understanding of its prevalence, risk factors, current clinical profile and the needs of those affected and their families.
The cantonal Ethics Committee of Bern approved the Swiss-CP-Reg project (project ID: 2017-00873, observational study, risk category A).
Objectives: The overall objective of the Swiss-CP-Reg is to improve future care and thus well-being of CP individuals. The development of a national registry for the collection of representative, complete and longitudinal data from children, adolescents and adults with CP in Switzerland serves to achieve this goal.
Primary objectives of the Swiss-CP-Reg projects:
1. Establish a representative population-based Swiss cohort of children, adolescents and adults with CP
2. Provide epidemiological data to investigate the incidence, prevalence, risk factors, spectrum of diagnosis, survival rates and mortality
3. Provide a platform for clinical research:
* Answer questions in the following areas: health, health care, education, social aspects and quality of life
* Offer a resource to recruit patients for nested observational and intervention studies
4. Provide a platform for communication:
* Promote the exchange of knowledge between clinics, researchers, therapists and national and cantonal health authorities
* Facilitate international collaborations, in particular with the \"Surveillance of Cerebral Palsy of Europe\" (SCPE), and benchmarking of used therapeutic approaches with international partners
Inclusion/exclusion criteria: all children, adolescents and adults diagnosed with CP who are born, treated or living in Switzerland. The SCPE decision tree is used for inclusion/exclusion. Patients with pure muscular hypotonia, neurometabolic diseases (e.g. neuronal storage diseases, leukodystrophies) and other progressive neurological diseases (e.g. spinocerebellar ataxias, hereditary spastic paraplegia, Rett syndrome, epileptic encephalopathy) are excluded.
Procedure: After a CP diagnosis of a child, the treating physician informs the family during a consultation in a clinic or practice in writing and orally about the Swiss-CP-Reg. Families who wish to participate sign the consent form and the children are registered in the Swiss-CP-Reg. If families do not wish to participate, only a minimal anonymous data set is recorded.
The following data will be collected:
* Medical data
* Data from questionnaires for patients and families
* Data from links to routine statistics and medical registries
Clinical data (report of new cases and follow-up reports): CP Classification; Perinatal history; Diagnosis information; Possible CP causes; Neuroradiological examinations; Classification of motor skills (mobility, manual ability); Comorbidities, e.g. epilepsy, visual impairment, pain; Development and learning difficulties; Communication and nutrition; Hip and spinal pathologies (e.g. scoliosis); Treatments and therapies e.g. physiotherapy, hip surgery, medication; Socio-economic resources of the family.
Questionnaire data: Personal information; Health-related quality of life; Participation in daily life; Medical care and medication; Communication and dietary problems; Comorbidities; Treatments; Aids; Education and social environment; Family needs
Routine data and linkages: Communities; Federal Statistical Office (e.g. the birth register, cause of death statistics, hospital statistics); SwissNeoNet (register for premature and at-risk children).
Current status: From 2017-2021, the investigators have included 580 persons diagnosed with CP (Status May 31 2021; from birth year 1998)
The Swiss-CP-Reg contact new diagnosed persons with CP at regular intervals, and continuously analyse and publish data and findings.
Funding: Swiss Cerebral Foundation, Anna Mueller Grocholski Foundation, Swiss Academy of Childhood Disability SACD, Hand in Hand Anstalt, Ostschweizer Kinderspital and ACCENTUS Charitable Foundation (Walter Muggli Fund).
Conditions
See the medical conditions and disease areas that this research is targeting or investigating.
Study Design
Understand how the trial is structured, including allocation methods, masking strategies, primary purpose, and other design elements.
COHORT
PROSPECTIVE
Study Groups
Review each arm or cohort in the study, along with the interventions and objectives associated with them.
Patient population
Children, adolescents and adults diagnosed with cerebral palsy who are born, treated or living in Switzerland
No interventions assigned to this group
Eligibility Criteria
Check the participation requirements, including inclusion and exclusion rules, age limits, and whether healthy volunteers are accepted.
Inclusion Criteria
* Who are born, treated for CP or living in Switzerland, and
* Who gave informed consent
Exclusion Criteria
* Neurometabolic diseases (e.g. neuronal storage diseases, leukodystrophies)
* Other progressive neurological diseases (e.g. spinocerebellar ataxias, hereditary spastic paraplegia, Rett syndrome, epileptic encephalopathy)
0 Years
ALL
No
Sponsors
Meet the organizations funding or collaborating on the study and learn about their roles.
Schweizerische Stiftung für das cerebral gelähmte Kind
UNKNOWN
SwissPedNet
UNKNOWN
University of Bern
OTHER
Responsible Party
Identify the individual or organization who holds primary responsibility for the study information submitted to regulators.
Principal Investigators
Learn about the lead researchers overseeing the trial and their institutional affiliations.
Claudia E Kuehni, Prof. MD
Role: PRINCIPAL_INVESTIGATOR
Institute of Social and Preventive Medicine (ISPM), University of Bern
Locations
Explore where the study is taking place and check the recruitment status at each participating site.
Aarau Cantonal Hospital
Aarau, , Switzerland
University Children's Hospital Basel, UKBB
Basel, , Switzerland
Pediatric Institute of Southern Switzerland, Ospedale San Giovanni
Bellinzona, , Switzerland
Institute of Social and Preventive Medicine (ISPM), University of Bern
Bern, , Switzerland
University Children's Hospital Bern, Inselspital
Bern, , Switzerland
Zentrum für Entwicklungsförderung und pädiatrische Neurorehabilitation
Biel, , Switzerland
University Hospitals of Geneva
Geneva, , Switzerland
University Children's hospital Lausane, CHUV
Lausanne, , Switzerland
Lucerne Cantonal Hospital
Lucerne, , Switzerland
Children's Hospital of Eastern Switzerland
Sankt Gallen, , Switzerland
Zentrum für Kinder mit Sinnes- und Körperbeeinträchtigung
Solothurn, , Switzerland
University Children's Hospital Zurich
Zurich, , Switzerland
Countries
Review the countries where the study has at least one active or historical site.
Central Contacts
Reach out to these primary contacts for questions about participation or study logistics.
Facility Contacts
Find local site contact details for specific facilities participating in the trial.
Christina Rüsch, Dr. med
Role: primary
Stephanie Jünemann, Dr. med
Role: primary
Barbara B Goeggel-Simonetti, PD Dr. med
Role: primary
Sebastian Grunt, PD Dr. med
Role: primary
Chantal Gammenthaler-Zaugg, Dr. med
Role: primary
Joel Fluss, PD Dr
Role: primary
Christopher Newman, PD Dr
Role: primary
Mareike Schimmel, Dr. med
Role: primary
Steffen Berweck, Prof Dr med
Role: primary
Letizia von Laer, Dr. med
Role: primary
Andreas Meyer-Heim, PD Dr. med
Role: primary
References
Explore related publications, articles, or registry entries linked to this study.
Belle FN, Hunziker S, Fluss J, Grunt S, Juenemann S, Kuenzle C, Meyer-Heim A, Newman CJ, Ramelli GP, Weber P, Claudia E K, Tscherter A. Cohort profile: the Swiss Cerebral Palsy Registry (Swiss-CP-Reg) cohort study. Swiss Med Wkly. 2022 Feb 21;152:w30139. doi: 10.4414/smw.2022.w30139. eCollection 2022 Feb 14.
Related Links
Access external resources that provide additional context or updates about the study.
Website of the registry
Other Identifiers
Review additional registry numbers or institutional identifiers associated with this trial.
2017-00873
Identifier Type: -
Identifier Source: org_study_id
More Related Trials
Additional clinical trials that may be relevant based on similarity analysis.