A common data language for clinical research studies: the National Institute of Neurological Disorders and Stroke and American Academy for Cerebral Palsy and Developmental Medicine Cerebral Palsy Common Data Elements Version 1.0 recommendations

Abstract

This is the first comprehensive Common Data Elements (CDEs) for children and young people with CP for clinical research. The CDEs for children and young people with CP include common definitions, the standardization of case report forms, and measures. The CDE guides the standardization for data collection and outcome evaluation in all types of studies with children and young people with CP. The CDE ultimately improves data quality and data sharing.

Neuromuscular correlates of motor function in cerebral palsy: towards targeted treatment

“…Findings from the study by Fox et al 3 describe some of the problems with behavioral observation that have been previously demonstrated, as well as new considerations. Specifically, their data suggest that scores derived from the validated revised Face, Legs, Activity, Cry, and Consolability (r-FLACC) instrument 4 correlate only moderately with…”

“…To increase the effectiveness of clinical research, CP‐specific Common Data Elements (CDEs) were recently developed through a partnership with the American Academy of Cerebral Palsy and Developmental Medicine (AACPDM) and the National Institute of Neurological Disorders and Stroke (NINDS) . Categorized into six domains, CDEs follow the International Classification of Functioning, Disability and Health framework.…”

“…Noble et al employed several CP‐specific CDEs within the 4th domain of Neuromotor Skills and Functional Assessments: Gross Motor Function Classification System, a 66‐item Gross Motor Function Measure, Selective Control Assessment of the Lower Extremity, and Modified Ashworth Score. Version 1.0 of the CP‐specific CDEs is now available in Developmental Medicine & Child Neurology . It is anticipated that global use of CDEs will help standardize data collection, improve data quality, and facilitate comparisons across studies.…”

“…To increase the effectiveness of clinical research, CPspecific Common Data Elements (CDEs) were recently developed through a partnership with the American Academy of Cerebral Palsy and Developmental Medicine (AACPDM) and the National Institute of Neurological Disorders and Stroke (NINDS). 3 3 It is anticipated that global use of CDEs will help standardize data collection, improve data quality, and facilitate comparisons across studies. By their use of CP-specific CDEs the investigators have done just that.…”

DMCN 2018 highlights: 60 years on …

“…Volume 60 also fostered informed discussion on controversial issues, for example mechanisms of brain injury associated with preterm birth, clinical integration of general movements assessment, relevance of Core Sets and Common Data Elements to clinical practice and research, and the utility of systematic reviews. Indeed, more systematic reviews than ever were submitted this year, with the opportunity to distil strong evidence for practice provided they are of high quality.…”