Internet-based neuro-oncology patient recruitment

Ricardo J. Komotar, Brad E. Zacharia, J. Mocco, Evan R. Ransom, Jeffrey P. Davis, George Gasparis, Jeffrey N. Bruce, Richard C.E. Anderson

Research output: Contribution to journalArticle

2 Scopus citations

Abstract

THE PRIVACY RULE, as part of the Health Insurance Portability and Accountability Act, was implemented in 2003 as a response to public concern over potential abuses of private health information. Although the Privacy Rule was not intended to place limits on clinical research, its complexity has caused much confusion throughout the academic medicine and research communities. Many clinical and translational researchers have created clinical databases or human tissue banks to facilitate future research. Maintenance of such databases is considered a research activity under the Privacy Rule, and researchers are, therefore, subject to its regulations. We present a novel Internet-based method to generate and maintain a neurooncology patient registry and human tissue bank. Through our web site, we secure both Health Insurance Portability and Accountability Act research authorization and informed consent, enabling us to contact the treating physician for clinical data and pathological specimens. Considering the importance of continued use of clinical databases and tissue banks in the genetic era of medicine, our method offers one way for researchers to adapt to the changing world of clinical research.

Original languageEnglish (US)
Pages (from-to)985-989
Number of pages5
JournalNeurosurgery
Volume58
Issue number5
DOIs
StatePublished - May 1 2006
Externally publishedYes

Keywords

  • Health insurance portability and accountability act
  • Institutional review board
  • Internet
  • Medicolegal
  • Neuro-oncology
  • Recruitment

ASJC Scopus subject areas

  • Clinical Neurology
  • Surgery

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  • Cite this

    Komotar, R. J., Zacharia, B. E., Mocco, J., Ransom, E. R., Davis, J. P., Gasparis, G., Bruce, J. N., & Anderson, R. C. E. (2006). Internet-based neuro-oncology patient recruitment. Neurosurgery, 58(5), 985-989. https://doi.org/10.1227/01.NEU.0000210228.08117.17