title: A breast cancer clinical registry in an Italian comprehensive cancer center: an instrument for descriptive, clinical, and experimental research.
abstract: In clinical research, many potentially useful variables are available via the routine activity of cancer center-based clinical registries (CCCR). We present the experience of the breast cancer clinical registry at Fondazione IRCCS "Istituto Nazionale dei Tumori" to give an example of how a CCCR can be planned, implemented, and used. Five criteria were taken into consideration while planning our CCCR: (a) available clinical and administrative databases ought to be exploited to the maximum extent; (b) open source software should be used; (c) a Web-based interface must be designed; (d) CCCR data must be compatible with population-based cancer registry data; (e) CCCR must be an open system, able to be connected with other data repositories. The amount of work needed for the implementation of a CCCR is inversely linked with the amount of available coded data: the fewer data are available in the input databases as coded variables, the more work will be necessary, for information technology staff, text mining analysis, and registrars (for collecting data from clinical records). A cancer registry in a comprehensive cancer center can be used for several research aspects, such as estimate of the number of cases needed for clinical studies, assessment of biobank specimens with specific characteristics, evaluation of clinical practice and adhesion to clinical guidelines, comparative studies between clinical and population sets of patients, studies on cancer prognosis, and studies on cancer survivorship.
authors.affiliation: Analytic Epidemiology and Health Impact Unit, Fondazione IRCCS "Istituto Nazionale dei Tumori", Milan - Italy.
authors.forename: Paolo
authors.initials: P
authors.lastname: Baili
authors.forename: Michele
authors.initials: M
authors.lastname: Torresani
authors.forename: Roberto
authors.initials: R
authors.lastname: Agresti
authors.forename: Giuseppe
authors.initials: G
authors.lastname: Rosito
authors.forename: Maria Grazia
authors.initials: MG
authors.lastname: Daidone
authors.forename: Silvia
authors.initials: S
authors.lastname: Veneroni
authors.forename: Ilaria
authors.initials: I
authors.lastname: Cavallo
authors.forename: Francesco
authors.initials: F
authors.lastname: Funaro
authors.forename: Marco
authors.initials: M
authors.lastname: Giunco
authors.forename: Alberto
authors.initials: A
authors.lastname: Turco
authors.forename: Hade
authors.initials: H
authors.lastname: Amash
authors.forename: Antonio
authors.initials: A
authors.lastname: Scavo
authors.forename: Pamela
authors.initials: P
authors.lastname: Minicozzi
authors.forename: Francesca
authors.initials: F
authors.lastname: Bella
authors.forename: Elisabetta
authors.initials: E
authors.lastname: Meneghini
authors.forename: Milena
authors.initials: M
authors.lastname: Sant
mesh_terms: D018070:Biological Specimen Banks; D035843:Biomedical Research; D001943:Breast Neoplasms; D002173:Cancer Care Facilities; D016208:Databases, Factual; D005260:Female; D006801:Humans; D007558:Italy; D012042:Registries