Cerebral PalsySwiss-CP-RegNCT04992871
Swiss Cerebral Palsy Registry
An observational study of Cerebral Palsy, run by University of Bern at 12 sites in Switzerland.
Trial 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. Read more about this study
- Who is it for?
- Ages 0 years and older
- Conditions the study is for
- Cerebral Palsy
- How many people
- 15,000 participants
- Where
- 12 sitesSwitzerland
- Study dates
- 19 Jun 2017to Jan 2071
- How long will I take part?
- 80 Years
- Phase
- Observational
- Are there results?
- Not yet: the study is under way
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 0 years and older
- All sexes
- No healthy volunteers
- Child, Adult, Older adult
Study population: All individuals living, born, or treated with a diagnosis of cerebral palsy in Switzerland
Who may be able to join
- 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
Who cannot join
- 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)
Trial locations and contacts
12 sites in 1 country. Contact the study team or a site near you to ask about taking part.
12 sites in 1 country
Switzerland12 sites, 12 recruiting
- Recruiting
Aarau Cantonal Hospital
Aarau
Christina Rüsch, Dr. med
- Recruiting
University Children's Hospital Basel, UKBB
Basel
Stephanie Jünemann, Dr. med
- Recruiting
Pediatric Institute of Southern Switzerland, Ospedale San Giovanni
Bellinzona
Barbara B Goeggel-Simonetti, PD Dr. med
- Recruiting
Institute of Social and Preventive Medicine (ISPM), University of Bern
Bern
Claudia E Kuehni, Prof. MD, +41 31 684 35 07, swiss-cp-reg.ispm@unibe.ch
- Recruiting
University Children's Hospital Bern, Inselspital
Bern
Sebastian Grunt, PD Dr. med
- Recruiting
Zentrum für Entwicklungsförderung und pädiatrische Neurorehabilitation
Biel
Chantal Gammenthaler-Zaugg, Dr. med
- Recruiting
University Hospitals of Geneva
Geneva
Joel Fluss, PD Dr
- Recruiting
University Children's hospital Lausane, CHUV
Lausanne
Christopher Newman, PD Dr
- Recruiting
Lucerne Cantonal Hospital
Lucerne
Mareike Schimmel, Dr. med
- Recruiting
Children's Hospital of Eastern Switzerland
Sankt Gallen
Steffen Berweck, Prof Dr med
- Recruiting
Zentrum für Kinder mit Sinnes- und Körperbeeinträchtigung
Solothurn
Letizia von Laer, Dr. med
- Recruiting
University Children's Hospital Zurich
Zurich
Andreas Meyer-Heim, PD Dr. med
About this study
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.
Read the detailed description
Background: Cerebral palsy (CP) refers to chronic movement and postural disorders. It results from a non-progressive lesion or brain malformation that occurs during the prenatal, perinatal, or postnatal period (e.g. ischemic lesions of the neonatal brain or genetic predispositions leading to brain malformation). Besides motor dysfunction, persons with CP suffer from a wide variety of comorbidities, such as epilepsy, speech, hearing or vision disorders, cognitive dysfunction, behavioral disorders, and secondary musculoskeletal problems.
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:
- Establish a representative population-based Swiss cohort of children, adolescents and adults with CP
- Provide epidemiological data to investigate the incidence, prevalence, risk factors, spectrum of diagnosis, survival rates and mortality
- 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
- 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
- Cerebral Palsy
- Medical subject headings
- Cerebral Palsy
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
| Study group | Role | What they receive |
|---|---|---|
| Patient population | Children, adolescents and adults diagnosed with cerebral palsy who are born, treated or living in Switzerland |
What is being measured
The primary outcome is the main question the study is designed to answer.
Personal data
Registering patients personal data
Measured: At diagnosis (age 0-5 years)
Change in date of registration
Change in date of last consultation at physician for data collection
Measured: 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))
Birth history neonatal care
Maternal birth history
Measured: At diagnosis (age 0-5 years)
Cause of change in vital status
what caused a change in patients vital status
Measured: 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))
Neonatal care
Neonatal care
Measured: At diagnosis (age 0-5 years)
Age
Age at diagnosis
Measured: At diagnosis (age 0-5 years)
Change in classification of CP
Change in CP classification according to SCPE decision tree
Measured: 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 gross motor function
Change in classification of gross motor function
Measured: 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 fine motor function
Change in classification of fine motor function
Measured: 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))
Postneonatal CP
Classification of postneonatal CP
Measured: At diagnosis (age 0-5 years)
Change in associated syndromes
Change in classification of associated syndromes using ICD code
Measured: 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 of congenital anomalies
Change in classification of congenital anomalies using ICD code
Measured: 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 of brain malformation
Change in classification of brain malformation using ICD code
Measured: 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 genetic syndromes
Change in analysis results on genetic mutation
Measured: 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 neuroimaging
Registration of change in neuro images
Measured: 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 anthropometrics
Registration of change in anthropometric data
Measured: 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 sensory difficulties
Registration of change in sensory capability
Measured: 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 nutrition
Registration of change in feeding habits
Measured: 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 speech
Change in classification of verbal communication using VSS
Measured: 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 communication
Change in classification of communication using CFCS
Measured: 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 comorbidities
Registration of change in comorbidities
Measured: 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 of hip
Hip surveillance: registration of change in hip-dislocation
Measured: 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 of scoliosis
Assessing change in scoliosis using Cobb Winkel
Measured: 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 surgery
Registering changes in surgery history
Measured: 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 treatments
Registering changes in treatments
Measured: 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 therapies
Registering changes in therapies
Measured: 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))
Changes in medical equipment
Registering changes in use of medical equipment
Measured: 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 ancillary service
Registering changes in use of ancillary service
Measured: 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 mobility
Registering changes in mobility
Measured: 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))
Changes in behavior
Assessing changes in behavior using scales
Measured: 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))
Changes in academic info
Registering changes in info on academic education
Measured: 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))
Changes in family history
Registering changes in info on health of family members
Measured: 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))
Changes in socio economics
Registering changes in info on parents socio-economic background
Measured: 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))
Changes in epilepsy
Registration changes in epilepsy
Measured: 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))
Questionnaire data
Questionnaires focusing on specific research questions (Perinatal history, health related questions, health behavior, quality of life, participation, needs, concerns)
Measured: 5-80 years
Change in cognition
Assessing changes in mental ability using tests and school typ
Measured: 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))
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted5 Aug 2021
- Study start19 Jun 2017
- Primary completionJan 2071 (estimated)
- Study completionJan 2071 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Publications (1)Papers the sponsor has linked to this study.
- Other trials for Cerebral PalsyStudies of the same condition, open and under way.
- More trials run by University of BernThe sponsor's other registered studies.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Cohort
- Time perspective
- Prospective
- Enrolment
- 15,000 participants (estimated)
- Target duration
- 80 Years
Sponsor and investigators
- Lead sponsor
- University of Bern
- Sponsor type
- University, hospital or other
- Collaborators
- Schweizerische Stiftung für das cerebral gelähmte Kind, SwissPedNet
- Responsible party
- Sponsor
- Investigators
- Claudia E Kuehni, Prof. MD, Principal investigator, Institute of Social and Preventive Medicine (ISPM), University of Bern
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT04992871
- Sponsor's protocol ID
- 2017-00873
- Other IDs
- 2017
- Acronym
- Swiss-CP-Reg
- Status last verified
- Feb 2026
- First submitted
- 22 Jul 2021
- Last updated
- 13 Feb 2026
- Results posted
- No
- Data monitoring committee
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- Yes: Researchers who wish to develop a nested study need to submit a proposal to the Swiss-CP-Reg committee and request permission. A concept sheet describing the planned analyses must be approved by the Swiss-CP-Reg committee. Nested studies might need separate ethics permission.
Publications
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.
PubMed 35230014
Study at a glance
From the registry record, last updated by the sponsor on 13 Feb 2026. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Swiss Cerebral Palsy Registry
- ClinicalTrials.gov ID
- NCT04992871
- Acronym / sponsor ID
- Swiss-CP-Reg / 2017-00873
- Conditions
- Cerebral Palsy
- Study type
- Observational
- Recruitment status
- Recruiting
- Enrolment
- 15,000 participants (estimated)
- Lead sponsor
- University of BernUniversity, hospital or other
- Collaborators
- Schweizerische Stiftung für das cerebral gelähmte Kind, SwissPedNet
- Study start
- 19 Jun 2017 (actual)
- Primary completion
- Jan 2071 (estimated)
- Study completion
- Jan 2071 (estimated)
- First posted
- 5 Aug 2021 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
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.
Detailed description
Background: Cerebral palsy (CP) refers to chronic movement and postural disorders. It results from a non-progressive lesion or brain malformation that occurs during the prenatal, perinatal, or postnatal period (e.g. ischemic lesions of the neonatal brain or genetic predispositions leading to brain malformation). Besides motor dysfunction, persons with CP suffer from a wide variety of comorbidities, such as epilepsy, speech, hearing or vision disorders, cognitive dysfunction, behavioral disorders, and secondary musculoskeletal problems.
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:
- Establish a representative population-based Swiss cohort of children, adolescents and adults with CP
- Provide epidemiological data to investigate the incidence, prevalence, risk factors, spectrum of diagnosis, survival rates and mortality
- 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
- 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).
Study design
- Observational model
- Cohort
- Time perspective
- Prospective
- Target follow-up
- 80 Years
- Number of arms
- 1
| Arm | Type | Receives |
|---|---|---|
| Patient population | – | –Children, adolescents and adults diagnosed with cerebral palsy who are born, treated or living in Switzerland |
Who may qualify
- Ages
- 0 years and older
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Child, Adult, Older adult
- Study population
- All individuals living, born, or treated with a diagnosis of cerebral palsy in Switzerland
Key inclusion criteria (3 listed)
- 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
Key exclusion criteria (3 listed)
- 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)
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Primary outcome
Personal data
Time frame: At diagnosis (age 0-5 years)
Registering patients personal data
Change in date of registration
Time frame: 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
Time frame: At diagnosis (age 0-5 years)
Maternal birth history
Cause of change in vital status
Time frame: 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
Time frame: At diagnosis (age 0-5 years)
Neonatal care
Age
Time frame: At diagnosis (age 0-5 years)
Age at diagnosis
Change in classification of CP
Time frame: 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
Time frame: 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
Time frame: 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
Time frame: At diagnosis (age 0-5 years)
Classification of postneonatal CP
Change in associated syndromes
Time frame: 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
Time frame: 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
Time frame: 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
Time frame: 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
Time frame: 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
Time frame: 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
Time frame: 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
Time frame: 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
Time frame: 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
Time frame: 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
Time frame: 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
Time frame: 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
Time frame: 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
Time frame: 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
Time frame: 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
Time frame: 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
Time frame: 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
Time frame: 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
Time frame: 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
Time frame: 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
Time frame: 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
Time frame: 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
Time frame: 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
Time frame: 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
Time frame: 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
Time frame: 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
Results and safety
This study is still under way. Results are not available in the source record yet.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 13 Feb 2026.
- Results publication: PubMed 35230014Belle 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.
- Website of the registryLink provided by the sponsor.
- Individual participant dataSharing planned: Yes. Researchers who wish to develop a nested study need to submit a proposal to the Swiss-CP-Reg committee and request permission. A concept sheet describing the planned analyses must be approved by the Swiss-CP-Reg committee. Nested studies might need separate ethics permission.
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part.
Claudia E Kuehni, Prof. MD principal investigator
Institute of Social and Preventive Medicine (ISPM), University of Bern
12 sites in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Cerebral Palsy, run by University of Bern at 12 sites in Switzerland.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 3 inclusion and 3 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: looking for participants now, as of the sponsor's last update on 13 Feb 2026. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 12 sites in Switzerland. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
This study is still under way. Results are not available in the source record yet.
How can a doctor refer a patient or contact the research team?
Contact Claudia E Kuehni, Prof. MD (+41 31 684 35 07, swiss-cp-reg.ispm@unibe.ch), or a site near the patient. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Personal data (time frame: At diagnosis (age 0-5 years)). The study lists 36 primary outcomes in all. It is what the study was designed to measure, not a finding.
Where can I read the original study information?
On the ClinicalTrials.gov record for NCT04992871, which also lists 1 linked publication.
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 13 Feb 2026.