The NINDS/AACPDM Common Data Elements (CDEs) for Cerebral Palsy is an open source on-line resource developed through a collaborative process between the National Institutes of Health, National Institute of Neurological Disease and Stroke and AACPDM. This resource allows standardization of data collection and assessment by providing: 1) valid and reliable measures that are recommended for routine use in research studies and clinical practice in cerebral palsy (CP) and 2) a minimum set of measures that comprehensively represent the functional profile of children and youth with CP. The CDEs were developed by a steering committee and seven working groups that were comprised of over 40 AACPDM members.
The working groups were:
(1) Participant Characteristics and Disease/Injury Related Events;
(2) Health, Growth, Genetics, Comorbidities, and Labs;
(3) Neuroimaging Diagnostics;
(4) Neuromotor Skill and Functional Assessments;
(5) Neurocognitive, Social, and Emotional Assessments;
(6) Engagement and Quality of Life Assessments; and
(7) Integrated Across Working Groups.
This resource expedites research in CP by minimizing the time required to select meaningful study outcomes and providing standardized tools, including case report and data collection forms.