Related Experiment Video
Updated: Mar 23, 2026
Use of a Video Scoring Anchor for Rapid Serial Assessment of Social Communication in Toddlers
Published on: March 14, 2018
A combined surveillance program and quality register improves management of childhood disability
Ann I Alriksson-Schmidt1, Marianne Arner2,3, Lena Westbom4
1a Department of Clinical Sciences, Division of Orthopaedics , Lund University , Lund , Sweden.
Insights
Multidisciplinary follow-up programs for cerebral palsy (CP) and myelomeningocele (MMC) effectively prevent secondary conditions. These longitudinal registries improve early detection and intervention for individuals with these chronic neuromuscular disabilities.
Area of Science:
- Rehabilitation Medicine
- Public Health
- Epidemiology
Background:
- Individuals with chronic neuromuscular disabilities like cerebral palsy (CP) and myelomeningocele (MMC) are susceptible to secondary health conditions.
- Early and consistent monitoring is crucial for managing these complex health needs.
Purpose of the Study:
- To present a model for preventing secondary conditions in individuals with CP and MMC.
- To describe the development and implementation of two Swedish follow-up programs: CPUP for cerebral palsy and MMCUP for myelomeningocele.
Main Methods:
- Utilizing two multidisciplinary, longitudinal follow-up programs (CPUP and MMCUP) that function as national registries.
- Implementing population-based programs within Swedish habilitation clinics.
- Enrolling a high percentage of eligible individuals with CP and MMC, with ongoing adult recruitment and international adoption.
Main Results:
- CPUP covers 95% of children born with CP since 2000 and is expanding to adults and internationally.
- MMCUP includes nearly all children born with MMC since 2007 and is inviting individuals of all ages.
- These registries provide epidemiological data and platforms for research and quality improvement.
Conclusions:
- Multidisciplinary follow-up programs enable early detection and intervention, leading to more effective and less complex treatments.
- These longitudinal programs are effective in preventing secondary conditions in individuals with CP and MMC.
- The paper discusses the practicalities and challenges of establishing and maintaining such population-based registries.
Purpose:
To describe a concept for prevention of secondary conditions in individuals with chronic neuromuscular disabilities by using two Swedish developed follow-up-programmes for cerebral palsy (CP; CPUP) and myelomeningocele (MMC; MMCUP) respectively as examples.
Method:
This paper describes and outlines the rationale, development and implementation of CPUP and MMCUP.
Results:
Both programmes are multidisciplinary longitudinal follow-up programmes that simultaneously serve as national registries. The programmes are population-based and set in Swedish habilitation clinics. Most children (95%) born 2000 or later with CP are enrolled in CPUP and the recruitment of adults is underway. CPUP has also been implemented in Norway, Denmark, Iceland, Scotland and parts of Australia. In MMCUP, almost all children with MMC born 2007 or later participate and individuals of all ages are now invited. The registries provide epidemiological profiles associated with CP and MMC and platforms for population-based research and quality of care improvement.
Conclusions:
Through multidisciplinary follow-up and early detection of emerging complications individuals with CP or MMC can receive less complex and more effective interventions than if treatment is implemented at a later stage. Possibilities and challenges to design, implement and continuously run multidisciplinary secondary prevention follow-up programmes and quality registries for individuals with CP or MMC are described and discussed. Implications for rehabilitation Individuals with disabilities such as cerebral palsy or myelomeningocele are at risk of developing secondary conditions. Multidisciplinary population-based longitudinal follow-up programmes seem effective in preventing certain types of secondary conditions.
More Related Videos
Related Concept Videos
01:30Specialized Care Centers and Settings-II
Rural health centers are specialized care facilities in remote locations with very few medical personnel. The primary care providers who run the centers are mostly Registered Nurse Practitioners. Here, emergency treatment is provided to critically ill or injured patients before they are transferred to the closest hospital. Fortunately, due to advancement in technology, many rural healthcare facilities and professionals have easy access to diagnostic and treatment...
01:26Principles of Disease Surveillance
01:30Specialized Care Centers and Settings-I
Daycare centers
They provide several functions. Some facilities care for healthy newborns and children whose parents work, while others are medically focused and care for...
01:25Learning Disabilities
Dyslexia
Dyslexia is a...
01:19Autism Spectrum Disorder
These core symptoms manifest differently among individuals, ranging from mild to severe. The disorder's complexity extends beyond its clinical presentation, encompassing a diverse range of biological, cognitive, and sociocultural influences.
01:27Nursing Clinical Information System
A Nursing Clinical Information System (NCIS) is a specialized type of healthcare information system tailored to meet the unique needs of nursing practice. It incorporates the principles of nursing informatics to streamline information management and improve the quality of care delivery.
Critical attributes of NCIS include: