Common data elements in epilepsy research: Development and implementation of the NINDS epilepsy CDE project

David W. Loring, Daniel H. Lowenstein, Nicholas M. Barbaro, Brandy E. Fureman, Joanne Odenkirchen, Margaret P. Jacobs, Joan K. Austin, Dennis J. Dlugos, Jacqueline A. French, William Davis Gaillard, Bruce P. Hermann, Dale C. Hesdorffer, Steven N. Roper, Anne C. Van Cott, Stacie Grinnon, Alexandra Stout

Research output: Contribution to journalArticle

Abstract

The Common Data Element (CDE) Project was initiated in 2006 by the National Institute of Neurological Disorders and Stroke (NINDS) to develop standards for performing funded neuroscience-related clinical research. CDEs are intended to standardize aspects of data collection; decrease study start-up time; and provide more complete, comprehensive, and equivalent data across studies within a particular disease area. Therefore, CDEs will simplify data sharing and data aggregation across NINDS-funded clinical research, and where appropriate, facilitate the development of evidenced-based guidelines and recommendations. Epilepsy-specific CDEs were established in nine content areas: (1) Antiepileptic Drugs (AEDs) and Other Antiepileptic Therapies (AETs), (2) Comorbidities, (3) Electrophysiology, (4) Imaging, (5) Neurological Exam, (6) Neuropsychology, (7) Quality of Life, (8) Seizures and Syndromes, and (9) Surgery and Pathology. CDEs were developed as a dynamic resource that will accommodate recommendations based on investigator use, new technologies, and research findings documenting emerging critical disease characteristics. The epilepsy-specific CDE initiative can be viewed as part of the larger international movement toward "harmonization" of clinical disease characterization and outcome assessment designed to promote communication and research efforts in epilepsy. It will also provide valuable guidance for CDE improvement during further development, refinement, and implementation. This article describes the NINDS CDE Initiative, the process used in developing Epilepsy CDEs, and the benefits of CDEs for the clinical investigator and NINDS.

Original languageEnglish (US)
Pages (from-to)1186-1191
Number of pages6
JournalEpilepsia
Volume52
Issue number6
DOIs
StatePublished - Jun 2011
Externally publishedYes

Fingerprint

National Institute of Neurological Disorders and Stroke
Epilepsy
Research
Anticonvulsants
Research Personnel
Neuropsychology
Information Dissemination
Electrophysiology
Neurosciences
Comorbidity
Seizures
Communication
Quality of Life
Outcome Assessment (Health Care)
Guidelines
Pathology
Technology
Common Data Elements

Keywords

  • Epilepsy
  • National Institute of Neurological Disorders and Stroke
  • Research

ASJC Scopus subject areas

  • Clinical Neurology
  • Neurology

Cite this

Loring, D. W., Lowenstein, D. H., Barbaro, N. M., Fureman, B. E., Odenkirchen, J., Jacobs, M. P., ... Stout, A. (2011). Common data elements in epilepsy research: Development and implementation of the NINDS epilepsy CDE project. Epilepsia, 52(6), 1186-1191. https://doi.org/10.1111/j.1528-1167.2011.03018.x

Common data elements in epilepsy research : Development and implementation of the NINDS epilepsy CDE project. / Loring, David W.; Lowenstein, Daniel H.; Barbaro, Nicholas M.; Fureman, Brandy E.; Odenkirchen, Joanne; Jacobs, Margaret P.; Austin, Joan K.; Dlugos, Dennis J.; French, Jacqueline A.; Gaillard, William Davis; Hermann, Bruce P.; Hesdorffer, Dale C.; Roper, Steven N.; Van Cott, Anne C.; Grinnon, Stacie; Stout, Alexandra.

In: Epilepsia, Vol. 52, No. 6, 06.2011, p. 1186-1191.

Research output: Contribution to journalArticle

Loring, DW, Lowenstein, DH, Barbaro, NM, Fureman, BE, Odenkirchen, J, Jacobs, MP, Austin, JK, Dlugos, DJ, French, JA, Gaillard, WD, Hermann, BP, Hesdorffer, DC, Roper, SN, Van Cott, AC, Grinnon, S & Stout, A 2011, 'Common data elements in epilepsy research: Development and implementation of the NINDS epilepsy CDE project', Epilepsia, vol. 52, no. 6, pp. 1186-1191. https://doi.org/10.1111/j.1528-1167.2011.03018.x
Loring DW, Lowenstein DH, Barbaro NM, Fureman BE, Odenkirchen J, Jacobs MP et al. Common data elements in epilepsy research: Development and implementation of the NINDS epilepsy CDE project. Epilepsia. 2011 Jun;52(6):1186-1191. https://doi.org/10.1111/j.1528-1167.2011.03018.x
Loring, David W. ; Lowenstein, Daniel H. ; Barbaro, Nicholas M. ; Fureman, Brandy E. ; Odenkirchen, Joanne ; Jacobs, Margaret P. ; Austin, Joan K. ; Dlugos, Dennis J. ; French, Jacqueline A. ; Gaillard, William Davis ; Hermann, Bruce P. ; Hesdorffer, Dale C. ; Roper, Steven N. ; Van Cott, Anne C. ; Grinnon, Stacie ; Stout, Alexandra. / Common data elements in epilepsy research : Development and implementation of the NINDS epilepsy CDE project. In: Epilepsia. 2011 ; Vol. 52, No. 6. pp. 1186-1191.
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