title: Internet-based neuro-oncology patient recruitment.
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.
authors.affiliation: Department of Neurological Surgery, Columbia University, New York, New York, USA.
authors.forename: Ricardo J
authors.initials: RJ
authors.lastname: Komotar
authors.forename: Brad E
authors.initials: BE
authors.lastname: Zacharia
authors.forename: J
authors.initials: J
authors.lastname: Mocco
authors.forename: Evan R
authors.initials: ER
authors.lastname: Ransom
authors.forename: Jeffrey P
authors.initials: JP
authors.lastname: Davis
authors.forename: George
authors.initials: G
authors.lastname: Gasparis
authors.forename: Jeffrey N
authors.initials: JN
authors.lastname: Bruce
authors.forename: Richard C E
authors.initials: RC
authors.lastname: Anderson
mesh_terms: D001932:Brain Neoplasms / Q000235:genetics*; D003219:Confidentiality / Q000941:ethics / Q000592:standards; D020408:Health Insurance Portability and Accountability Act / Q000941:ethics / Q000592:standards; D006801:Humans; D020407:Internet / Q000941:ethics / Q000592:standards*; D018579:Patient Selection / Q000941:ethics; D012042:Registries / Q000941:ethics / Q000592:standards*; D014015:Tissue Banks / Q000941:ethics / Q000592:standards*; D014481:United States