NINDS Cerebral Palsy Common Data Elements: Updates; Relationship to the International Classification of Functioning, Disability, and Health (ICF); Applications for International Research and Clinical Utility
Year of Publication
Brandenburg, Joline; Schiariti, Verónica; Mendoza-Puccini, M. Carolina; Feldman, Robin; Mcintyre, Sarah; NINDS/AACPDM Cerebral Palsy CDE Oversight Committee and Working Groups
Applications for International Research and Clinical Utility; NINDS Cerebral Palsy Common Data Elements; Relationship to the International Classification of Functioning Disability and Health (ICF)
Purpose: This course will provide an overview of the practical applications of the Cerebral Palsy (CP) Common Data Elements (CDEs), discuss the relationship between CP CDEs to the ICF and ICF Core Sets for CP, and demonstrate use of the CP CDEs in research and clinical practice. Course Summary: This course will advance attendees knowledge of the CP CDEs. In this course, we will discuss the purpose of the National Institute of Neurologic Disorders and Stroke (NINDS) CDEs and the impact of the CDEs on research in the US. Using the ICF and ICF Core Sets for children and youth with CP as a content reference, we will discuss gaps and overlaps in tools included in the CDEs, guiding future revisions. We will present updates to the NINDS CDEs website and CP CDEs. Lastly, we will demonstrate how the CP CDEs can be used in national and international research and clinical practice. Learning Objective 1: To understand the purpose and impact of the NINDS CDEs, including the CP CDEs Learning Objective 2: To define the relationship of the ICF framework to the current content of the CP Common Data Elements. Learning Objective 3: To be aware of updates in the CP CDEs. Learning Objective 4: To develop an understanding and skills in using the CP CDE in national and international research and clinical practice. Course Format (include Speaker Topics, Break time, and Q&A time): Speaker 1: Joline Brandenburg (10 minutes): Introduce speakers and provide overview of course objectives. Speaker 2: Carolina Mendoza-Puccini (20 minutes): Purpose of NINDS Common Data Elements, review updates to the NINDS Common Data Elements website. Speaker 3: Robin Feldman (15 minutes): Review impact of CDE project in US. Speaker 4: Veronica Schiariti (20 minutes): ICF classification and the relationship of the ICF framework to the CP Common Data Elements. Speaker 5: Sarah McIntyre (15 minutes) Discuss use and application of CP Common Data Elements in international research. Speaker 6: Joline Brandenburg (20 minutes) Discuss use of the CP Common Data Elements in US research and clinical practice, including updates to the CP Common Data Elements Open Discussion: (20 minutes) audience and panel speakers to allow ample time for questions and debate.