Swiss Cerebral Palsy Registry

NCT04992871 | Recruiting

• 1 other identifier: 2017-00873
• Study Type: observational
• Target: 15,000
• Locations: 1 country
• Sites: 12

Brief 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. 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.

Conditions

Cerebral Palsy

Outcome Measures

Primary Outcomes (36)

• Personal data

  Registering patients personal data

  At diagnosis (age 0-5 years)

• Change in date of registration

  Change in date of last consultation at physician for data collection

  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

  At diagnosis (age 0-5 years)

• Cause of change in vital status

  what caused a change in patients vital status

  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

  At diagnosis (age 0-5 years)

• Age

  Age at diagnosis

  At diagnosis (age 0-5 years)

• Change in classification of CP

  Change in CP classification according to SCPE decision tree

  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

  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

  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

  At diagnosis (age 0-5 years)

• Change in associated syndromes

  Change in classification of associated syndromes using ICD code

  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

  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

  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

  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

  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

  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

  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

  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

  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

  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

  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

  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

  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

  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

  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

  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

  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

  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

  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

  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

  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

  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

  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

  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)

  5-80 years

• Change in cognition

  Assessing changes in mental ability using tests and school typ

  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))

Study Arms (1)

Patient population

Children, adolescents and adults diagnosed with cerebral palsy who are born, treated or living in Switzerland

Eligibility Criteria

• Age: 0 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)
• Sampling Method: Probability Sample

Study Population

All individuals living, born, or treated with a diagnosis of cerebral palsy in Switzerland

You may qualify if:

• 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

You may not qualify if:

• 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)

Sponsors & Collaborators

• University of Bern: lead
• Schweizerische Stiftung für das cerebral gelähmte Kind: collaborator
• SwissPedNet: collaborator

Study Sites (12)

Aarau Cantonal Hospital

Aarau, Switzerland

RECRUITING

University Children's Hospital Basel, UKBB

Basel, Switzerland

RECRUITING

Pediatric Institute of Southern Switzerland, Ospedale San Giovanni

Bellinzona, Switzerland

RECRUITING

Institute of Social and Preventive Medicine (ISPM), University of Bern

Bern, Switzerland

RECRUITING

University Children's Hospital Bern, Inselspital

Bern, Switzerland

RECRUITING

Zentrum für Entwicklungsförderung und pädiatrische Neurorehabilitation

Biel, Switzerland

RECRUITING

University Hospitals of Geneva

Geneva, Switzerland

RECRUITING

University Children's hospital Lausane, CHUV

Lausanne, Switzerland

RECRUITING

Lucerne Cantonal Hospital

Lucerne, Switzerland

RECRUITING

Children's Hospital of Eastern Switzerland

Sankt Gallen, Switzerland

RECRUITING

Zentrum für Kinder mit Sinnes- und Körperbeeinträchtigung

Solothurn, Switzerland

RECRUITING

University Children's Hospital Zurich

Zurich, Switzerland

RECRUITING

Related Publications (1)

• 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.

  PMID: 35230014 RESULT

Related Links

• Website of the registry

MeSH Terms

Conditions

Cerebral Palsy

Condition Hierarchy (Ancestors)

Brain Damage, Chronic; Brain Diseases; Central Nervous System Diseases; Nervous System Diseases

Study Officials

• Claudia E Kuehni, Prof. MD

  Institute of Social and Preventive Medicine (ISPM), University of Bern

  PRINCIPAL INVESTIGATOR

Central Study Contacts

Claudia E Kuehni, Prof. MD

CONTACT

+41 31 684 35 07; swiss-cp-reg.ispm@unibe.ch

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Target Duration: 80 Years
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: July 22, 2021
• First Posted: August 5, 2021
• Study Start: June 19, 2017
• Primary Completion (Estimated): January 1, 2071
• Study Completion (Estimated): January 1, 2071
• Last Updated: February 13, 2026

Record last verified: 2026-02

Data Sharing

• IPD Sharing: Will share

Locations

CH (12)