Skip to main content
OpenTrials
Recruiting

NCT Number: NCT04992871

Swiss Cerebral Palsy Registry

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.

Recruiting

Interested in participating?

Request Info

Key information

Conditions

Cerebral Palsy Brain Damage, Chronic Brain Diseases Central Nervous System Diseases Nervous System Diseases

Age range

0 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

Aarau Cantonal Hospital, Aarau, Switzerland

Loading trial locations.

About this study

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).

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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)

Treatment and study plan

Primary outcomes

  1. Personal data

    Time frame: At diagnosis (age 0-5 years)

    Registering patients personal data

  2. 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

  3. Birth history neonatal care

    Time frame: At diagnosis (age 0-5 years)

    Maternal birth history

  4. 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

  5. Neonatal care

    Time frame: At diagnosis (age 0-5 years)

    Neonatal care

  6. Age

    Time frame: At diagnosis (age 0-5 years)

    Age at diagnosis

  7. 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

  8. 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

  9. 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

  10. Postneonatal CP

    Time frame: At diagnosis (age 0-5 years)

    Classification of postneonatal CP

  11. 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

  12. 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

  13. 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

  14. 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

  15. 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

  16. 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

  17. 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

  18. 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

  19. 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

  20. 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

  21. 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

  22. 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

  23. 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

  24. 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

  25. 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

  26. 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

  27. 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

  28. 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

  29. 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

  30. 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

  31. 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

  32. 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

  33. 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

  34. 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

  35. 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)

  36. 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

Study contacts

Contact information is provided by the study sponsor or research team.

Claudia E Kuehni, Prof. MD

CONTACT

[email protected]

+41 31 684 35 07

Sponsors and collaborators

Lead sponsor

University of Bern

Other

Collaborators

  • Schweizerische Stiftung für das cerebral gelähmte Kind
  • SwissPedNet

Registry information

Acronym: Swiss-CP-Reg

Important dates

Study start
2017
Primary completion
2071
Study completion
2071
First posted
Aug 5, 2021
Registry last updated
Feb 13, 2026

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

Related clinical trials

Published trials that share one or more normalized conditions with this study.