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Development of a Cerebral Palsy Follow-up Registry in Jordan (CPUP-Jordan)
N A Almasri1, M Saleh1, S Abu-Dahab2
1Department of Physiotherapy, Faculty of Rehabilitation Sciences, The University of Jordan, Amman, Jordan.
Insights
A new Cerebral Palsy Follow-up Registry in Jordan (CPUP-Jordan) was successfully established. This registry provides crucial baseline data on children with cerebral palsy (CP) and their families in Jordan.
Area of Science:
- Pediatric neurology
- Public health surveillance
- Rehabilitation medicine
Background:
- Cerebral palsy (CP) poses a significant health challenge globally, necessitating robust data collection for effective management and intervention.
- Jordan lacked a dedicated follow-up registry for children with CP, hindering comprehensive understanding and targeted support.
- Establishing a national registry is vital for tracking CP prevalence, characteristics, and outcomes.
Purpose of the Study:
- To describe the development and implementation of the Cerebral Palsy Follow-up Registry in Jordan (CPUP-Jordan).
- To provide baseline demographic and clinical data for children with CP and their families in Jordan.
- To analyze the distribution of CP types, topographical involvement, and functional limitations.
Main Methods:
- The CPUP-Jordan registry was modeled after the successful Swedish CPUP program.
- Standardized assessment forms collected data on child/family demographics, birth history, functional status, and therapies.
- A secure web-based system was developed for data storage and dissemination, with trained research assistants conducting assessments.
Main Results:
- 167 children with CP were registered between 2013-2015 (mean age 3.6 years).
- High rates of prematurity (42%), low birthweight (48%), and perinatal causes (54%) were observed.
- Spastic quadriplegia and diplegia were the most common CP types and topographical distributions, with significant functional limitations in ambulation (56%), manual ability (48%), and communication (47%).
Conclusions:
- The development of the CPUP-Jordan registry is feasible and provides valuable baseline data.
- Registry data align with previous Jordanian research, supporting its validity.
- CPUP-Jordan is expected to positively impact children with CP, clinicians, policymakers, and researchers at a national level.
Aims:
This study aims to describe the development of a Cerebral Palsy Follow-up Registry in Jordan (CPUP-Jordan) and to provide a baseline child and parent demographic information, birth history of the child participants, and distribution of the participants based on topographical distribution of cerebral palsy (CP) and functional classification systems.
Methods:
The CPUP-Jordan was developed using a similar framework of a follow-up surveillance programme for persons with CP in Sweden (CPUP). Standard assessment forms were utilized to collect data related to child and family demographics, child birth history, and functional classifications and physiotherapy and occupational therapy assessments and interventions. Research assistants were trained to conduct the assessments. A secured web-based system was developed to store data and disseminate knowledge maintained in the registry. Children with CP were included in the registry if they have confirmed diagnosis of CP. The ascertainment age of inclusion and the minimum age of survival required are 4 years.
Results:
One hundred sixty-seven children were registered between 2013 and 2015 (mean age is 3.6 ± 3.0 years). Forty-two percent were born premature, and 48% were less than the normal birthweight. Perinatal causes were reported for 54% of the participants. The most common type of CP based on tone disturbance was spastic type, and the most common topographical distributions of motor dysfunction were quadriplegia followed by diplegia. Fifty-six percent of the participants had severe limitation in ambulation; 48% had restricted manual abilities, and 47% had limited communication abilities even with familiar family members and partners.
Conclusions:
The development of CPUP-Jordan registry for children with CP proved to be both feasible and informative. The registry baseline descriptive data were similar to those reported in previous research in Jordan supporting validity of the data. The implementation of CPUP-Jordan at national level is expected to have a positive impact on children with CP, clinicians, policymakers, and researchers.
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