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

Cerebral palsy information system with an approach to information architecture: a systematic review

“…A total of 39 articles on the components of CP information system architecture were reviewed, of which 13 had been conducted in Europe,23 26–37 10 in the USA,38–47 6 in Australia,48–53 7 in Asia1 12 54–58 and 3 in Africa 59–61…”

“…Twenty articles (51.28%) cited various international classifications of diseases, including ICD-10, International Classification of Functioning, Disability and Health (ICF), ICE-CY, Gross Motor Function Classification System (GMFCS) and Manual Ability Classification System (MACS), utilised for standardising datasets related to CP 1 23 27 28 36–41 43 44 46 49 50 54 57–59 61. The majority of cases were related to the use of ICF and GMFCS.…”

“…Fifteen studies indicated data sharing among different bodies (38.46%). The most important sharing data axes were: (1) data sharing among various organisations such as rehabilitation centres, CP associations, clinics and national CP databases, cited in 11 articles (28.2%) including the highest number of cases26 27 30 40 44 50 54 55 59–61; (2) data exchange of registry with data bases or registries indicated in nine articles26 27 30 40 41 50 53 55 59–61; (3) data sharing among universities, research centres and clinics, cited in seven articles26 27 40 41 50 60 61 and (4) data sharing among patients and their relatives with CP registries, cited in six articles (15.38%) 40 44 46 53 54 59…”

“…The necessity of controlling the quality of data generated in the information systems was highlighted in 10 articles (25.64%) 26 27 33 36 37 44 50 53 54 58. In seven articles (17.94%), the data producers were in charge of data quality control.…”

Gender differences in treatments and interventions received by children and adolescents with cerebral palsy

“…The program is multidisciplinary and involves professionals from specialties such as orthopedic surgery, pediatric neurology, hand surgery, occupational therapy (OT) and PT. CPUP, or a modified version of the program, has been implemented in Norway, Denmark, Iceland, Scotland, New South Wales (Australia), and most recently in Jordan [25,26]. Participants follow assessment schedules, and based on age and GMFCS level, they complete CPUP assessments once or twice per year.…”