Sandra Julsen Hollung

Vestfold Hospital Trust · Norwegian Quality and Surveillance Registry for Cerebral Palsy (NorCP)

Commentary

Aim To describe the point prevalence of cerebral palsy (CP) and distribution of gross and fine motor function in individuals registered in a CP‐North surveillance programme. Method Aggregate data of individuals with CP aged 6 to 19 years, sex, CP subtype, and gross and fine motor function levels were collected from each programme. Overall and age‐...

Aim To describe the total burden of disease in individuals with cerebral palsy (CP) in Norway. Method A comprehensive set of disorder categories were extracted from the Norwegian Patient Registry using International Statistical Classification of Diseases, 10th Revision diagnosis codes for individuals born between 1996 and 2010 who received special...

Aim To investigate the use of general practitioners and urgent care centres (UCC) among children and adolescents with cerebral palsy (CP) compared to a control group, and per gross motor function level. Method Data on children with CP born 1996 to 2014 were collected from the Norwegian Quality and Surveillance Registry for Cerebral Palsy. A contro...

Letter to the Editor: On a risk difference scale, an estimated proportion of 69% (0.00130/0.00189) of the effect of ART on CP is mediated through multiple pregnancy.

The Norwegian Quality and Surveillance Registry for Cerebral Palsy (NorCP) has systematically collected data on individuals with cerebral palsy (CP) and been a driver of knowledge dissemination for over 20 years. NorCP data have increased the competence of health professionals in both the municipal and specialist healthcare services through publica...

Introduction The aim was to investigate the risk, prevalence, and clinical characteristics of cerebral palsy among children born after assisted reproductive technology (ART) in Norway. Material and methods All liveborn children from 2002 to 2015 were included. Information was collected from the Medical Birth Registry of Norway, linked to the Norwe...

Objective: To report the prevalence of cerebral palsy (CP) in children with severe congenital heart defects (CHD) and the outcome/severity of the CP. Methods: Population-based, data-linkage study between cerebral palsy and congenital anomaly registers in Europe and Australia. The EUROCAT definition of severe CHD (sCHD) was used. Linked data from f...

Aim To assess case fatality rate (CFR), infant mortality, and long‐term neurodevelopmental disorders (NDDs) after invasive group B streptococcal (GBS; Streptococcus agalactiae) infection in infants. Method Children born in Norway between 1996 and 2019 were included. Data on pregnancies/deliveries, GBS infection, NDDs, and causes of death were retr...

Background Cerebral palsy (CP) is an umbrella term where an injury to the immature brain affects muscle tone and motor control, posture, and at times, the ability to walk and stand. Orthoses can be used to improve or maintain function. Ankle-foot orthoses (AFOs) are the most frequently used orthoses in children with CP. However, how commonly AFOs a...

Aim To study the prevalence, birth, and clinical characteristics of children with dyskinetic cerebral palsy (CP) in Norway compared with spastic quadriplegic CP and other spastic CP subtypes. Method Data on children born from 1996 to 2015 were collected from the Norwegian Quality and Surveillance Registry for Cerebral Palsy and the Medical Birth R...

Aim: Cerebral visual impairment (CVI), a frequently occurring functional impairment in children with neurodevelopmental disorders, leads to communicative, social and academic challenges. In Norway, children with neurodevelopmental disorders are assessed at paediatric habilitation centres. Our aims were to explore how CVI is identified, how paediat...

Aim To determine trends and current estimates in regional and global prevalence of cerebral palsy (CP). Method A systematic analysis of data from participating CP registers/surveillance systems and population‐based prevalence studies (from birth year 1995) was performed. Quality and risk of bias were assessed for both data sources. Analyses were c...

Purpose Children with cerebral palsy (CP) are at risk of cognitive impairments and need to be cognitively assessed to allow for individualized interventions, if applicable. Therefore, a systematic protocol for the follow-up of cognition in children with CP, CPCog, with assessments offered at five/six and 12/13 years of age, was developed. This rep...

In this letter we advocate for rights of children with disabilities in the Ukrainian conflict zone. We express solidarity with colleagues and families helping refugees in nearby countries. Please donate and.support associations helping refugees with disabilities

Aim To describe causal events, perinatal risk factors and clinical characteristics in children with postneonatal cerebral palsy (PNCP). Methods Population-based registry study of Norwegian children born 1999-2013. Prevalence, causal events and clinical characteristics of PNCP were described. The occurrence of perinatal risk factors for CP was comp...

Cerebral palsy (CP) comprises a heterogeneous group of conditions recognized by disturbances of movement and posture and is caused by a non-progressive injury to the developing brain. Birth prevalence of CP is about 2–2.5 per 1,000 live births. Although the motor impairment is the hallmark of the diagnosis, individuals with CP often have other impa...

Abstract Background Spasticity is present in more than 80% of the population with cerebral palsy (CP). The aim of this study was to describe and compare the use of three spasticity reducing methods; Botulinum toxin-A therapy (BTX-A), Selective dorsal rhizotomy (SDR) and Intrathecal baclofen therapy (ITB) among children and adolescents with CP in si...

BACKGROUND For more than 20 years, intramuscular injections of botulinum toxin A have been an established treatment for spasticity in children with cerebral palsy. We investigated the proportion of children with cerebral palsy who receive such treatment in Norway and the guidelines that apply to the treatment. MATERIAL AND METHOD Data from the fiv...

Aims: To describe the early experiences of a Nordic multidisciplinary cerebral palsy (CP) registry research program combining data from national medical quality registries, follow-up programs and cohort data, in addition to data from other national registries; to explore the scientific and practical uses of such research, and provide recommendatio...

The Surveillance of Cerebral Palsy in Europe (SCPE) 20th Anniversary Scientific Report 1998-2018.

Background: The aim of our study was to explore if the prevalence and clinical characteristics of cerebral palsy (CP), concomitant with perinatal health indicators in the general population, remained unchanged for children born in Norway between 1999 and 2010. Methods: This national multi-register cohort study included 711 174 children recorded...

Background and Objective(s): Children with cerebral palsy (CP) and epilepsy have more severe gross motor impairment and higher prevalence of associated problems compared with children with CP without epilepsy. The Cerebral Palsy Register of Norway (CPRN) is a national medical quality register that records data on children and youths at three points...

Introduction: The objective of this study was to explore time trends on children born 1996–2009, recorded in The Cerebral Palsy Register of Norway. Patients and method: 2165 children with CP (58% boys) were categorized into 3 time periods based upon birth years: PI, 1996–1999; PII, 2000–2004; and PIII, 2005–2009. Chi-Square statistics were used to...

Aim: To assess completeness and correctness of cerebral palsy (CP) diagnoses in the Cerebral Palsy Register of Norway (CPRN) and the Norwegian Patient Register (NPR), and to estimate CP prevalence. Method: Among 747 883 Norwegian residents born from 1996 to 2007, 2231 had a diagnosis of CP in the NPR while 1441 were registered in the CPRN. Child...

Background and Objective(s): The Cerebral Palsy Register of Norway (CPRN) is a national medical quality register that has recorded data on children and youths in Norway since birth year 1996. The main aims are to monitor the prevalence of CP, clinical characteristics and associated impairments, and to report significant time trends. Thus, the objec...

Title: Prediction of speech intelligibility of children with cerebral palsy (CP) from characteristics at 2 years of age Background: Approximately half of all children with CP have difficulties communicating. The ability to predict speech outcome from early childhood characteristics would enable tailored early intervention to promote communication...

To study to what extent associated impairments recorded at the time of diagnosis are present at five years of age, to identify areas of concern early.

To study if the proportion of children with CP treated with BoNT-A differ between GMFCS and MACS levels, as well as between the health regions in Norway.

There are nearly 200 national medical quality registries in Scandinavia that collect a defined set of clinical data on patients with a specific diagnosis or condition, with the aim to monitor and improve healthcare services nationwide. However, there is great variation in the quality of data recorded in the registries. Therefore, a literature revie...

Background and aims CP is a clinical diagnosis caused by a brain anomaly or injury early in life. Cerebral MRI is increasingly used in the diagnostic work-up to demonstrate the location and extension of the lesion, and may in addition provide clues to aetiology and timing. The aim of this study was to describe the distribution of different MRI patt...

Introduction: Most cerebral palsy (CP) registers record data when the diagnosis is confirmed. The goal of the CP Register of Norway (CPRN) is to also record follow-up data in adolescence. Such data can be used to assess challenges in the transition from childhood to adulthood, and quality of care. For this purpose a comprehensive registration was d...