The National Institute of Neurological Disorders and Stroke (NINDS) Cerebral Palsy Common Data Elements (CDE]): What They Are, Ways to Use Them, and Gaps, Mini-Symposium
09/11/2023
Conference Paper
Authors:
Brandenburg, J.;
Mendoza-Puccini, C.;
Moulton, T.Sukal;
Feldman, R.;
Shierk, A.
Secondary:
American Academy for Cerebral Palsy and Developmental Medicine 77th Annual Meeting
Location: Chicago, IL
Publisher: American Academy for Cerebral Palsy and Developmental Medicine 77th Annual Meeting
URL:
https://www.aacpdm.org/events/2023
Abstract:
Purpose: Through a partnership with the American Academy of Cerebral Palsy and Developmental Medicine (AACPDM), the National Institute of Neurological Disorders and Stroke (NINDS), initiated the development of cerebral palsy (CP) specific Common Data Elements (CDE) as part of the NINDS project to develop data standards for all funded clinical research in neuroscience. The first iteration (Version 1.0) of the NINDS CP CDEs was made available on the NINDS CDE website in December 2016. Use of the CP CDEs, associated case report forms, and validated instruments is highly recommended for investigators submitting research grant applications involving children with CP to NIH. In addition to the research utility, the CP CDEs, case report forms, and instruments can also be utilized in clinical practice, quality improvement projects, and education. Thus, this course is intended to facilitate a demystifying of the CP CDEs, demonstrate navigation of the NINDS CDE website, and demonstrate various ways to utilize this tool. Furthermore, attendees will also be instrumental in providing feedback on the CP CDEs with regard to areas for improvement, gaps, and potential next directions for strengthening the value of the CP CDEs for all who care for and do research involving individuals with CP.
Course Summary: The CP CDEs are an important step towards faster CP study start-up and data sharing. As the CP CDEs, case report forms, and instruments have been used, their utility beyond research has been identified, especially for clinical practice, quality improvement, and education. In this course, we will discuss the standardized process used to determine the recommended CP CDEs and instruments. We will describe how to locate and use the CP CDEs, case report forms, and instruments on the NINDS website. This course will include demonstrations of navigating the NINDS CDE website and selecting CP CDEs and instruments; examples of how CP CDEs can be used for developing a research study; how to set up the CP CDEs in REDCap for collecting data; and examples of use of the CP CDEs in clinical practice, quality improvement, and education. We will also highlight how users can submit feedback on the website. We will have an interactive session with CP CDE Oversight Committee members where participants (bring own laptops) can navigate the CP CDE website and also provide input on gaps in the CP CDEs and instruments, input for next directions to continue to improve and strengthen the utility of the CP CDEs.
Learning Objectives:
1. Define CP CDEs, case report forms, and instruments.
2. Describe the process for developing and adding CP CDEs and instruments.
3. Demonstrate how to navigate the NINDS CDE website
4. Demonstrate how to use CP CDEs and case report forms in research, clinical practice, and education
