© 2015 INTM, Italy. Published by Wichig Publishing
TJ
ISSN 0300-8916
Tumori 2015; 101(4): 440-446
ORIGINAL ReseARch ARTIcLe
cancer center. The importance of CCCRs is also underlined by
the Organisaion of European Cancer Insitutes (OECI) (7): in
fact, the comprehensive cancer center accreditaion assess-
ment (8, 9) includes the presence of a cancer registraion sys-
tem in OECI candidate cancer centers.
The Fondazione IRCCS “Isituto Nazionale dei Tumori”
(INT) in Milan is a naional oncology reference center, estab-
lished in 1928, for care and research. Isituto Nazionale dei
Tumori acivity is relected by the 21,650 hospitalizaions and
over 1.2 million services incurred in 2013 (e.g., diagnosis,
laboratory, outpaient, radiotherapy) (10). This acivity pro-
duces a mulitude of data that are currently diicult to be
accessed, used, and shared in a uniform way. For this rea-
son, INT is establishing CCCRs for speciic oncologic patholo-
gies, which would allow researchers and clinicians to quickly
idenify cases of interest, with access to a predeined set of
demographic, clinical, and biological variables collected in
a standardized way. Since October 1, 2011, an insituional
clinical registry for breast cancer is in place, bearing clinical,
pathologic, and biomolecular data of all cases operated in
the INT Breast Surgery Unit and, in the same period, INT has
DOI: 10.5301/tj.5000341
A breast cancer clinical registry in an Italian
comprehensive cancer center: an instrument for
descripive, clinical, and experimental research
Paolo Baili
1
, Michele Torresani
2
, Roberto Agresi
3
, Giuseppe Rosito
2
, Maria Grazia Daidone
4
, Silvia Veneroni
4
, Ilaria Cavallo
1
,
Francesco Funaro
1
, Marco Giunco
2
, Alberto Turco
1
, Hade Amash
1
, Antonio Scavo
4
, Pamela Minicozzi
1
, Francesca Bella
1
,
Elisabeta Meneghini
1
, Milena Sant
1
1
Analyic Epidemiology and Health Impact Unit, Fondazione IRCCS “Isituto Nazionale dei Tumori”, Milan - Italy
2
Informaion and Communicaions Technology Unit, Fondazione IRCCS “Isituto Nazionale dei Tumori”, Milan - Italy
3
Breast Surgery Unit, Fondazione IRCCS “Isituto Nazionale dei Tumori”, Milan - Italy
4
Experimental Oncology Department, Fondazione IRCCS “Isituto Nazionale dei Tumori”, Milan - Italy
Introducion
Cancer registraion may be performed both at populaion
and clinical levels. Populaion-based cancer registries (PBCRs)
are considered a pillar of cancer control (1-4); however, they
do not rouinely collect detailed clinical and biomolecular
characterisics of the cancer (5), and few of them are con-
nected with biobanks (6). By contrast, clinical research is
typically based on data from the cancer center-based clinical
registries (CCCRs), which can rouinely collect data on clinical
and biological characterisics of all paients treated at the
ABsTRAcT
In clinical research, many potenially useful variables are available via the rouine acivity of cancer center-based
clinical registries (CCCR). We present the experience of the breast cancer clinical registry at Fondazione IRCCS
“Isituto Nazionale dei Tumori” to give an example of how a CCCR can be planned, implemented, and used. Five
criteria were taken into consideraion while planning our CCCR: (a) available clinical and administraive databases
ought to be exploited to the maximum extent; (b) open source sotware should be used; (c) a Web-based inter-
face must be designed; (d) CCCR data must be compaible with populaion-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
implementaion of a CCCR is inversely linked with the amount of available coded data: the fewer data are avail-
able in the input databases as coded variables, the more work will be necessary, for informaion technology staf,
text mining analysis, and registrars (for collecing data from clinical records). A cancer registry in a comprehen-
sive cancer center can be used for several research aspects, such as esimate of the number of cases needed for
clinical studies, assessment of biobank specimens with speciic characterisics, evaluaion of clinical pracice and
adhesion to clinical guidelines, comparaive studies between clinical and populaion sets of paients, studies on
cancer prognosis, and studies on cancer survivorship.
Keywords: Breast cancer, Breast cancer registry, Clinical cancer registry, Comprehensive cancer center
Accepted: December 23, 2014
Published online: May 2, 2015
corresponding author:
Paolo Baili
Analyic Epidemiology and Health Impact Unit
Fondazione IRCCS “Isituto Nazionale dei Tumori”
Via Venezian 1
20133 Milan, Italy
lifetable@isitutotumori.mi.it