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Development of a Cerebral Palsy Follow-up Registry in Jordan (CPUP-Jordan).

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Title: Development of a Cerebral Palsy Follow-up Registry in Jordan (CPUP-Jordan).
Authors: Almasri, N. A., Saleh, M., Abu‐Dahab, S., Malkawi, S. H., Nordmark, E.
Source: Child: Care, Health & Development. Jan2018, Vol. 44 Issue 1, p131-139. 9p. 3 Charts, 3 Graphs.
Subjects: Low birth weight, Cerebral palsy, Communicative competence, Reporting of diseases, Premature infants, Public health surveillance, Quadriplegia, Sample size (Statistics), Data analysis software, Functional assessment, Descriptive statistics, Children
Geographic Terms: Jordan
Abstract: 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. [ABSTRACT FROM AUTHOR]
Copyright of Child: Care, Health & Development is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
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  Data: Development of a Cerebral Palsy Follow-up Registry in Jordan (CPUP-Jordan).
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  Data: <searchLink fieldCode="AR" term="%22Almasri%2C+N%2E+A%2E%22">Almasri, N. A.</searchLink><br /><searchLink fieldCode="AR" term="%22Saleh%2C+M%2E%22">Saleh, M.</searchLink><br /><searchLink fieldCode="AR" term="%22Abu‐Dahab%2C+S%2E%22">Abu‐Dahab, S.</searchLink><br /><searchLink fieldCode="AR" term="%22Malkawi%2C+S%2E+H%2E%22">Malkawi, S. H.</searchLink><br /><searchLink fieldCode="AR" term="%22Nordmark%2C+E%2E%22">Nordmark, E.</searchLink>
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  Data: <searchLink fieldCode="JN" term="%22Child%3A+Care%2C+Health+%26+Development%22">Child: Care, Health & Development</searchLink>. Jan2018, Vol. 44 Issue 1, p131-139. 9p. 3 Charts, 3 Graphs.
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  Data: <searchLink fieldCode="DE" term="%22Low+birth+weight%22">Low birth weight</searchLink><br /><searchLink fieldCode="DE" term="%22Cerebral+palsy%22">Cerebral palsy</searchLink><br /><searchLink fieldCode="DE" term="%22Communicative+competence%22">Communicative competence</searchLink><br /><searchLink fieldCode="DE" term="%22Reporting+of+diseases%22">Reporting of diseases</searchLink><br /><searchLink fieldCode="DE" term="%22Premature+infants%22">Premature infants</searchLink><br /><searchLink fieldCode="DE" term="%22Public+health+surveillance%22">Public health surveillance</searchLink><br /><searchLink fieldCode="DE" term="%22Quadriplegia%22">Quadriplegia</searchLink><br /><searchLink fieldCode="DE" term="%22Sample+size+%28Statistics%29%22">Sample size (Statistics)</searchLink><br /><searchLink fieldCode="DE" term="%22Data+analysis+software%22">Data analysis software</searchLink><br /><searchLink fieldCode="DE" term="%22Functional+assessment%22">Functional assessment</searchLink><br /><searchLink fieldCode="DE" term="%22Descriptive+statistics%22">Descriptive statistics</searchLink><br /><searchLink fieldCode="DE" term="%22Children%22">Children</searchLink>
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  Data: <searchLink fieldCode="DE" term="%22Jordan%22">Jordan</searchLink>
– Name: Abstract
  Label: Abstract
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  Data: 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. [ABSTRACT FROM AUTHOR]
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  Data: <i>Copyright of Child: Care, Health & Development is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.</i> (Copyright applies to all Abstracts.)
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        Value: 10.1111/cch.12527
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      – Code: eng
        Text: English
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      Pagination:
        PageCount: 9
        StartPage: 131
    Subjects:
      – SubjectFull: Low birth weight
        Type: general
      – SubjectFull: Cerebral palsy
        Type: general
      – SubjectFull: Communicative competence
        Type: general
      – SubjectFull: Reporting of diseases
        Type: general
      – SubjectFull: Premature infants
        Type: general
      – SubjectFull: Public health surveillance
        Type: general
      – SubjectFull: Quadriplegia
        Type: general
      – SubjectFull: Sample size (Statistics)
        Type: general
      – SubjectFull: Data analysis software
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      – SubjectFull: Functional assessment
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      – SubjectFull: Descriptive statistics
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      – SubjectFull: Children
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      – SubjectFull: Jordan
        Type: general
    Titles:
      – TitleFull: Development of a Cerebral Palsy Follow-up Registry in Jordan (CPUP-Jordan).
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              Text: Jan2018
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