<b>The project</b><br> The Tumour Registry (TR) has actually become a supporting tool for the current practice as well as for epidemiological/basic research (as part of the Division of Epidemiology and Biostatistics), guaranteeing a quick analysis of the IEO clinical activity and playing a key role in the production of scientific publications.<br><br> The purpose is also to provide global information on the activity of the hospital, to document the cancer burden borne by the hospital for specific periods of time, to provide background information useful for the design of clinical studies, and to encourage clinicians and researchers to enquire about data and run new projects on the population of our patients<br><br> Eligible to enter the Registry are all those coming to the IEO for consultation since its opening, with unique identification number (patients’ record) and at least one episode accessible from Institute’s intranet. A minimum data set of variables was defined and data entry was divided in 4 forms. <br><br> Data Collected<br> <b>The following types of record are assigned:</b><br> 1. Visit: a healthy individual comes to IEO for either visit or genetic counselling.<br> 2. Anamnesis: the patient, at the moment free of disease, reports on a tumour diagnosed in the past and already treated and cured.<br> 3. Diagnosis: diagnosis of tumour is made at IEO. The patient decides to be treated elsewhere.<br> 4. Second Opinion: the patient or the patient’s parents come to IEO and ask for a second opinion on a diagnosis and/or a treatment proposed elsewhere.<br> 5. Long: the patient receives at least one treatment at IEO. <br><br> <b>Data collected:</b> Briefly, on the first form personal data (i.e., sex, address, date of birth) and information on follow-up (i.e., date of last contact, date of last visit, vital status, cause of death) are recorded.<br> Detailed information on patient’s tumour(s) (i.e., date of diagnosis, morphology, topography, TNM staging) is recorded on the second form, together with some epidemiological information (i.e., familiarity, height and weight at diagnosis and smoking habits).<br> The third form is dedicated to the treatment strategy, where every therapy is classified as administered or proposed. The fourth is dedicated to the chronology of events, in order to better describe the history of the disease and to take note of the tissues preserved in the Biobank of IEO.<br><br> <b>Sources of information for data collection are:</b><br> 1. database of patients’ administrative data (personal information is automatically downloaded);<br> 2. files accessible on intranet;<br> 3. online databases (surgery, laboratory medicine);<br> 4. patients’ clinical dossier digitalized and accessible on e-Paper.
Eleven studies based on the data from the TR have been published so far.
Over 15 studies in collaboration with other divisions of the IEO are ongoing.
The TR will soon be linked with the Biobank, allowing new molecular features to be available.
The IEO TR has proven to be functional and reliable in monitoring the activity of the Hospital, allowing extraction of data from any subset of patients with characteristics of interest.
This structured and centralized Registry represents an important tool for our research-oriented Institution.
In 2013 the IEO TR has been granted the ISO 9001-2008 certification.
Catania C., Botteri E., De Pas T.et al, Molecular features and clinical outcome of lung malignancies in very young people, Future Oncology, Vol. 11, No. 8.