Internet-based neuro-oncology patient recruitment

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

Research output: Contribution to journalArticle

2 Citations (Scopus)

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

Fingerprint

Internet
Patient Selection
Tissue Banks
Health Insurance Portability and Accountability Act
Research
Privacy
Research Personnel
Databases
Medicine
Informed Consent
Registries
Maintenance
Physicians
Health

All Science Journal Classification (ASJC) codes

  • Surgery
  • Clinical Neurology

Cite this

Komotar, R. J., Zacharia, B., Mocco, J., Ransom, E. R., Davis, J. P., Gasparis, G., ... 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
Komotar, Ricardo J. ; Zacharia, Brad ; Mocco, J. ; Ransom, Evan R. ; Davis, Jeffrey P. ; Gasparis, George ; Bruce, Jeffrey N. ; Anderson, Richard C.E. / Internet-based neuro-oncology patient recruitment. In: Neurosurgery. 2006 ; Vol. 58, No. 5. pp. 985-989.
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Komotar, RJ, Zacharia, B, Mocco, J, Ransom, ER, Davis, JP, Gasparis, G, Bruce, JN & Anderson, RCE 2006, 'Internet-based neuro-oncology patient recruitment', Neurosurgery, vol. 58, no. 5, pp. 985-989. https://doi.org/10.1227/01.NEU.0000210228.08117.17

Internet-based neuro-oncology patient recruitment. / Komotar, Ricardo J.; Zacharia, Brad; Mocco, J.; Ransom, Evan R.; Davis, Jeffrey P.; Gasparis, George; Bruce, Jeffrey N.; Anderson, Richard C.E.

In: Neurosurgery, Vol. 58, No. 5, 01.05.2006, p. 985-989.

Research output: Contribution to journalArticle

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Komotar RJ, Zacharia B, Mocco J, Ransom ER, Davis JP, Gasparis G et al. Internet-based neuro-oncology patient recruitment. Neurosurgery. 2006 May 1;58(5):985-989. https://doi.org/10.1227/01.NEU.0000210228.08117.17