Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2011 Jun;52(6):1186-91.
doi: 10.1111/j.1528-1167.2011.03018.x. Epub 2011 Mar 22.

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

David W Loring  1 , 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
Affiliations

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

David W Loring et al. Epilepsia. 2011 Jun.

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.

PubMed Disclaimer

Conflict of interest statement

DISCLOSURES

None of the authors has any conflict of interest to disclose.

We confirm that we have read the Journal’s position on issues involved in ethical publication, and affirm that this report is consistent with those guidelines.

References

    1. Begg C, Cho M, Eastwood S, Horton R, Moher D, Olkin I, Pitkin R, Rennie D, Schulz KF, Simel D, Stroup DF. Improving the quality of reporting of randomized controlled trials. The CONSORT statement. Jama. 1996;276:637–639. - PubMed
    1. Bossuyt PM, Reitsma JB, Bruns DE, Gatsonis CA, Glasziou PP, Irwig LM, Lijmer JG, Moher D, Rennie D, de Vet HC. Towards complete and accurate reporting of studies of diagnostic accuracy: the STARD initiative. Bmj. 2003;326:41–44. - PMC - PubMed
    1. Hachinski V, Donnan GA, Gorelick PB, Hacke W, Cramer SC, Kaste M, Fisher M, Brainin M, Buchan AM, Lo EH, Skolnick BE, Furie KL, Hankey GJ, Kivipelto M, Morris J, Rothwell PM, Sacco RL, Smith SC, Jr, Wang Y, Bryer A, Ford GA, Iadecola C, Martins SC, Saver J, Skvortsova V, Bayley M, Bednar MM, Duncan P, Enney L, Finklestein S, Jones TA, Kalra L, Kleim J, Nitkin R, Teasell R, Weiller C, Desai B, Goldberg MP, Heiss WD, Saarelma O, Schwamm LH, Shinohara Y, Trivedi B, Wahlgren N, Wong LK, Hakim A, Norrving B, Prudhomme S, Bornstein NM, Davis SM, Goldstein LB, Leys D, Tuomilehto J. Stroke: working toward a prioritized world agenda. Cerebrovasc Dis. 2010;30:127–147. - PMC - PubMed
    1. Hachinski V, Iadecola C, Petersen RC, Breteler MM, Nyenhuis DL, Black SE, Powers WJ, DeCarli C, Merino JG, Kalaria RN, Vinters HV, Holtzman DM, Rosenberg GA, Wallin A, Dichgans M, Marler JR, Leblanc GG. National Institute of Neurological Disorders and Stroke-Canadian Stroke Network vascular cognitive impairment harmonization standards. Stroke. 2006;37:2220–2241. - PubMed
    1. Kesselring J, Coenen M, Cieza A, Thompson A, Kostanjsek N, Stucki G. Developing the ICF Core Sets for multiple sclerosis to specify functioning. Mult Scler. 2008;14:252–254. - PubMed

MeSH terms

Substances