Establish Registry of Cerebral Palsy in Tanta Egypt

altonoby, abdalrahem; Tawfek, mohamed; Abdalazim, Faten; Kilany, Ayman

doi:10.5455/ijtrr.000000260

Cited by 2 publications

(6 citation statements)

References 12 publications

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“…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…”

Section: Resultsmentioning

confidence: 99%

“…The most important organisations using data include rehabilitation research centres, CP associations and international, non-governmental and insurance organisations using the data generated in a variety of ways 27 29–31 33 35 36 38 39 41 50 51 53 55 56 59 60…”

Section: Resultsmentioning

confidence: 99%

“…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.…”

Section: Resultsmentioning

confidence: 99%

“…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…”

Section: Resultsmentioning

confidence: 99%

“…The governing organisations can also use these data indirectly (through research centres and academic associations) or directly to set the relevant policies 26 36 41 59 60…”

Section: Discussionmentioning

confidence: 99%

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

Afzali

Etemad

Kazemi

et al. 2019

BMJ Health Care Inform

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BackgroundLong-term complications and high costs of cerebral palsy (CP) as well as inconsistency in data related to this disease reveal the need for extensive planning to obtain accurate and complete data for the effective management of patients.ObjectiveThe present study reviews the information architecture of CP information system.MethodThe relevant articles published from early 1988 to 31 July 2018 were extracted through searching PubMed, Scopus, Cochran, Web of Science and Embase databases conducted independently by two researchers.ResultsA total of 39 articles on CP information system were reviewed. Hospitals, rehabilitation centres and outpatient clinics were found to be the main organisations in charge of generating CP data. Each CP database used several data sources, with hospitals serving as the most important sources of information and the main generators of data. The main CP datasets were categorised into four groups of demographic data, diagnosis, motor function and visual impairment. The majority of data standards were related to the use of the International Classification of Functioning, Disability and Health and the Gross Motor Function Classification System. Finally, accuracy, completeness and consistency were the criteria employed in data quality control.ConclusionDeveloping a robust CP information system requires deploying the principles of information architecture when developing the system, as these can improve data structure and content of CP system, as well as data quality and data sharing.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

“…The governing organisations can also use these data indirectly (through research centres and academic associations) or directly to set the relevant policies 26 36 41 59 60…”

Section: Discussionmentioning

confidence: 99%

See 3 more Smart Citations

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

Afzali

Etemad

Kazemi

et al. 2019

BMJ Health Care Inform

View full text Add to dashboard Cite

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Cerebral palsy in Moldova: subtypes, severity and associated impairments

et al. 2018

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BackgroundMoldova is ranked as one of the countries in Europe with the lowest income per capita and with a relatively high infant and maternal mortality rate. Information on neurodisabilities in general is limited, and regarding cerebral palsy (CP) in particular, it is completely lacking. The aim of this study was therefore to make a crude estimate of the prevalence of CP and to describe subtypes and the severity of motor impairments and associated problems in this country.MethodsChildren with CP born 2009–2010, attending the National Hospital Institute of Mother and Child, the reference hospital for ~ 75% of children in Moldova with neurological disabilities, were identified from medical records.ResultsAmong 207 children with CP (estimated prevalence 3.4 per 1000 live births), 185 (mean age 7.3 years; 36% girls) had detailed information. Thirty seven (20%) children had spastic unilateral, 113 (61%) spastic bilateral, 22 (12%) dyskinetic and 9 (5%) children had ataxic CP. The subtype was unclassified in four children. Among all children, 93 (51%) had epilepsy, 109 (59%) intellectual disability, 42 (23%) severe vision and 10 (5%) hearing impairments while 84 (45%) children had severe speech impairments. Fifty-two (28%) children were born prematurely, and 46 (25%) had Apgar scores below 7 at five minutes.ConclusionCompared to other European studies, the distribution of CP subtypes was different in Moldova. Moreover, the estimated prevalence, the proportions with severe motor and associated impairments and of children born at term were higher in Moldova while the proportion with low Apgar did not differ. The findings may suggest different etiological pathways causing CP in Moldova than in other European countries. A national register is warranted for quality assurance and improvement.

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Establish Registry of Cerebral Palsy in Tanta Egypt

Cited by 2 publications

References 12 publications

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

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

Cerebral palsy in Moldova: subtypes, severity and associated impairments

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