Keeping Recommendations Current: Updates to the National Institute of Neurological Disorders and Stroke Epilepsy Common Data Element Recommendations
Abstract number :
1.195
Submission category :
4. Clinical Epilepsy / 4A. Classification and Syndromes
Year :
2018
Submission ID :
500391
Source :
www.aesnet.org
Presentation date :
12/1/2018 6:00:00 PM
Published date :
Nov 5, 2018, 18:00 PM
Authors :
Robin Feldman, The Emmes Corporation; Joan Austin, Indiana University; Jacqueline A. French, New York University Comprehensive Epilepsy Center; Nicholas Barbaro, Indiana University; Daniel Lowenstein, University of California - San Francisco; Muniza Sheik
Rationale: Through the development of epilepsy-specific common data elements (CDEs), the National Institute of Neurological Disorders and Stroke (NINDS) improves data collection by increasing efficiency to reduce study start-up time, improving data quality and facilitating data sharing/meta-analyses. CDEs are dynamic and evolve as needed with new scientific findings.To keep recommendations current, the 10 member Epilepsy CDE Oversight Committee (OC) reviews and updates the Epilepsy CDEs yearly for accuracy. In 2017, this group focused on two areas: revisions to epilepsy syndrome and seizure classifications made by the International League Against Epilepsy (ILAE) and updates to quality of life (QoL) recommendations. Methods: Two domain-specific Working Groups (WGs) met via teleconferences to discuss and implement changes to the CDEs. The QoL WG reviewed existing recommendations and made revisions based on a review of the literature of current adult, pediatric and general instruments. The Seizures & Syndromes WG reviewed the updates to classifications made by the ILAE to ensure the CDEs can be mapped to the revised categories. Results: The updated Epilepsy QoL CDEs were available on the NINDS CDE website in July 2017. These updated recommendations incorporate a reduced number of QoL instruments. The Seizures & Syndromes WG agreed on revisions to the Classification of Seizures and Classification of Etiology case report forms, which were posted to the NINDS CDE website for public review prior to being finalized. The website provides the updated information, as well as guidance on the prior recommendations for studies that have already been completed. Conclusions: NINDS encourages CDE use by the clinical research community to standardize the collection of data across studies.The NINDS CDEs are a continually evolving resource, requiring updates as research advancements indicate. These newly revised Epilepsy CDEs will serve as a valuable starting point for researchers and facilitate streamlining and sharing data. Funding: This project was funded by HHSN271201200034C and HHSN271201700064C.