Combined surveillance and treatment register for children with cerebral palsy: the protocol of the Netherlands CP register. 2023

Aukje Andringa, and Kirsten Veerkamp, and Marij Roebroeck, and Marjolijn Ketelaar, and Martijn Klem, and Hurnet Dekkers, and Jeanine Voorman, and Marieke van Driel, and Annemieke Buizer
Department of Rehabilitation Medicine, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, Netherlands a.andringa@amsterdamumc.nl.

Cerebral palsy (CP) is a childhood onset, lifelong, condition. Early detection and timely treatment of potential problems during the child's development are important to prevent secondary impairments and improve function. Clinical management of children with CP requires a spectrum of multidisciplinary interventions, which have an impact on short-term and long-term outcomes. However, there is a lack of knowledge about a personalised approach in this heterogeneous population. Various CP registers with different aims have been developed worldwide, which has made an important contribution to our understanding of CP. The purpose of this protocol is to describe the unique design of a combined multidisciplinary surveillance and treatment register for children with CP in the Netherlands, which aims to improve quality of care and to enhance an individual treatment approach. The Netherlands CP Register combines a multidisciplinary surveillance programme with a standardised protocol for treatment registry. The register systematically collects real-life surveillance and treatment data of children with CP. The register contributes to daily care at the individual level by screening for potential secondary impairments using a decision-support tool, by visualising individual development using a dashboard, and by supporting goal setting and shared decision-making for interventions. The register provides a platform at the national level for quality of care improvement and a comprehensive database of real-life data allowing multicentre studies with a long-term follow-up. People with lived experience of CP, healthcare professionals from different disciplines and researchers collaborated in the development of the register. The Netherlands CP register was submitted to the Medical Ethics Review Committee of VU University Medical Center (Amsterdam, the Netherlands), who judged the register not to be subject to the Medical Research Involving Human Subjects Act. A scientific board reviews requests for dissemination of data from the register for specific research questions.

UI MeSH Term Description Entries
D009426 Netherlands Country located in EUROPE. It is bordered by the NORTH SEA, BELGIUM, and GERMANY. Constituent areas are Aruba, Curacao, and Sint Maarten, formerly included in the NETHERLANDS ANTILLES. Holland,Kingdom of the Netherlands
D012042 Registries The systems and processes involved in the establishment, support, management, and operation of registers, e.g., disease registers. Parish Registers,Population Register,Parish Register,Population Registers,Register, Parish,Register, Population,Registers, Parish,Registers, Population,Registry
D002547 Cerebral Palsy A heterogeneous group of nonprogressive motor disorders caused by chronic brain injuries that originate in the prenatal period, perinatal period, or first few years of life. The four major subtypes are spastic, athetoid, ataxic, and mixed cerebral palsy, with spastic forms being the most common. The motor disorder may range from difficulties with fine motor control to severe spasticity (see MUSCLE SPASTICITY) in all limbs. Spastic diplegia (Little disease) is the most common subtype, and is characterized by spasticity that is more prominent in the legs than in the arms. Pathologically, this condition may be associated with LEUKOMALACIA, PERIVENTRICULAR. (From Dev Med Child Neurol 1998 Aug;40(8):520-7) Diplegic Infantile Cerebral Palsy,Little Disease,Monoplegic Cerebral Palsy,Quadriplegic Infantile Cerebral Palsy,Spastic Diplegia,CP (Cerebral Palsy),Cerebral Palsy, Athetoid,Cerebral Palsy, Atonic,Cerebral Palsy, Congenital,Cerebral Palsy, Diplegic, Infantile,Cerebral Palsy, Dyskinetic,Cerebral Palsy, Dystonic-Rigid,Cerebral Palsy, Hypotonic,Cerebral Palsy, Mixed,Cerebral Palsy, Monoplegic, Infantile,Cerebral Palsy, Quadriplegic, Infantile,Cerebral Palsy, Rolandic Type,Cerebral Palsy, Spastic,Congenital Cerebral Palsy,Diplegia, Spastic,Infantile Cerebral Palsy, Diplegic,Infantile Cerebral Palsy, Monoplegic,Infantile Cerebral Palsy, Quadriplegic,Little's Disease,Monoplegic Infantile Cerebral Palsy,Rolandic Type Cerebral Palsy,Athetoid Cerebral Palsy,Atonic Cerebral Palsy,Cerebral Palsies, Athetoid,Cerebral Palsies, Dyskinetic,Cerebral Palsies, Dystonic-Rigid,Cerebral Palsies, Monoplegic,Cerebral Palsy, Dystonic Rigid,Cerebral Palsy, Monoplegic,Diplegias, Spastic,Dyskinetic Cerebral Palsy,Dystonic-Rigid Cerebral Palsies,Dystonic-Rigid Cerebral Palsy,Hypotonic Cerebral Palsies,Hypotonic Cerebral Palsy,Mixed Cerebral Palsies,Mixed Cerebral Palsy,Monoplegic Cerebral Palsies,Spastic Cerebral Palsies,Spastic Cerebral Palsy,Spastic Diplegias
D002648 Child A person 6 to 12 years of age. An individual 2 to 5 years old is CHILD, PRESCHOOL. Children
D006801 Humans Members of the species Homo sapiens. Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man

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