Navigating the Updated National Institute of Neurological Disorders and Stroke Cerebral Palsy Common Data Elements Website

Publication Type
Presentation
Year of Publication
2020
Authors
Sukal Moulton, Theresa; Mendoza-Puccini, M. Carolina; Feldman, Robin; NINDS/AACPDM Cerebral Palsy CDE Oversight Committee and Working Groups
Keywords
Cerebral Palsy Common Data Elements website; Navigating; NINDS
Abstract
Navigating the Updated National Institute of Neurological Disorders and Stroke Cerebral Palsy Common Data Elements Website Presenters: Theresa Sukal Moulton, DPT, PhD, M. Carolina Mendoza-Puccini, MD and Robin Feldman, BS, MBA, on behalf of the NINDS/AACPDM Cerebral Palsy CDE Oversight Committee and Working Groups Learning Objectives: 1. Describe the process of revising 1.0 CP CDEs 2. Define the role of the CP OC in revising CP CDE 3. Demonstrate how to navigate the new website 4. Demonstrate how to use CP CDEs and case report forms in a research study Purpose: Through a partnership with the American Academy of Cerebral Palsy and Developmental Medicine (AACPDM), and the National Institute of Neurological Disorders and Stroke (NINDS), the cerebral palsy (CP) specific Common Data Elements (CDE) were developed as part of the NINDS project to develop data standards for clinical research in neuroscience. Version 1.0 of the NINDS CP CDEs was made available on the NINDS CDE website in December 2016. The CP CDEs are content standards that can be applied to various data collection models and are intended to be dynamic with updates over time. Based on public feedback, the NINDS CP CDE project has annually convened the CP CDE Oversight Committee to update version 1.0 CP CDEs. In 2019, the NINDS CDE website was updated to a new platform. This seminar is intended to facilitate a greater understanding about the CP CDEs and includes information on the process undertaken to revise and update the CP CDEs on the NINDS CDE website and to demonstrate the use of the CP CDEs in research studies. Target Audience: Clinical Researchers, Clinicians (PT, OT, SLP, physician, nurse, psychologist) Course Summary: To ensure that the CP CDEs remain a current and useful tool for investigators and their research teams, the CP CDE Oversight Committee reviews the CP CDEs based on recommended updates and feedback and to make recommendations regarding suggested corrections and updates. This seminar will discuss the purpose of the NINDS CDEs and the impact of the CDEs on research in the US and describes the CP CDE Oversight Committee development process of the Participant Condition Characteristics case report form, future updates to the CP CDEs, and reviews navigation of the CP CDE website with a brief demonstration of how to use CP CDEs in research. Participants are encouraged to bring their electronic devices to the course to practice navigating the website and searching for CP CDEs.