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Descriptive Epidemiology

Population and hospital cancer registers are the core of the activities. Population cancer registration is a crucial tool in assessing the frequency and distribution of tumors in order to understand their causes and adopt appropriate prevention and treatment measures. Hospital cancer registers, instead, support clinical research and management of hospitals.

1. Since 2015, in accordance to a regional law establishing the Population Based Cancer Registry of the Lazio region (RTL), the Unit has assumed – under the coordinating action of the Department of Epidemiology for the Lazio Regional Health Service – the role of “functional unit” for the ‘Città metropolitana di Roma’ area, covering a population of over 4,330,000 inhabitants and more than 24,000 estimated incident cases per year of malignant neoplasms per year. The Functional Unit has been involved in the validation, coding and registration of the cases collected from a dedicated regional platform. In addition, the unit has started combining the data from the regional platform with clinical data detected at IFO, in order to improve the quality of the registration. In 2020 the database of reference for the selection and registration of incident cases exceeded the threshold of 100,000 records, relative to all available years.
2. The hospital-based cancer registry (RTO) of the National Cancer Institute ‘Regina Elena’ was designed to define the occurrence, the topography and the morphology of the treated cases per year, to provide statistical reports according to the OECI standards, and - as collaborative unit of the Clinical Trial Centre IFO - to estimate the number of eligible patients for the clinical trials by specific neoplastic features. The registration activity continued with reference to the neoplastic sites of the breast, lung and colorectal for the years 2016-2019, reaching over 5,500 registrations in 2020. Periodic data analysis was performed for internal reports and for a planned scientific article.

EURACAN (EUropean network for Rare Adult solid CANcer)

EURACAN will enable a major improvement in the access to excellence diagnosis and treatment for European patients. IFO has been recognized as an ERN (European Reference Network) member with expertise in eight groups of rare tumors. The Unit was actively involved in the related activities, particularly in designing and implementing an institutional database capable of collecting data from the rare solid cancer patients who are diagnosed and/or treated at the Institute.

In 2020, the Unit has focused on the implementation of the IT platform in regard to the cases of patients with rare cancer referring to IFO since 2018; at the end of 2020 over 2.500 cases were registered. The Unit has also conducted training of the personnel involved in the process of identification and registration of cases. Other activities included periodic data analysis and reporting, and the publication of a scientific article on the clinical series relating to elderly patients with sarcoma.

Rarity Project

The Unit has participated in the national ACC RARITY project (Register rAre adult solid canceRs In iTalY). The goal of the project is to create an Italian clinical register, shared among the Italian centers accredited in EURACAN, which will collaborate within the European STARTER project for the definition of the European clinical register on rare cancers. The activity carried out concerned the definition of the methodology for data collection (core variables) and analysis.

Evaluative Epidemiology

The evaluation of the outcomes of health interventions is of particular relevance in an “Istituto di Ricovero e Cura a Carattere Scientifico” (IRCCS) such as the Regina Elena Institute. The evaluation, based on multiple indicators - both quantitative and qualitative - allows comparisons with other IRCCSs and hospitals, both at the regional and national level. The data obtained allow to monitor specific indicators for several neoplastic sites and to evaluate the quality of the coding diagnosis and treatments, taking into account concurrent risks in patients.

The Unit was involved in the internal audit for: 1) the Regional Outcome Evaluation Program ( P.Re.Val.E.); 2) the National Outcome Evaluation Program (PNE). The main objectives are: observational assessment of the efficacy and the effectiveness of health-care interventions; identification of factors within the health-care delivery process that affect outcomes; monitoring levels of care. In this framework, technical reports for the National Cancer Institute “Regina Elena” (Report on P.Re.Val.E. 2020; Report on PNE 2019) were submitted to the Medical Directorate.

The Unit has also coordinated audits prescribed by the Department of Epidemiology of Regional Health Service of the Lazio Region on “Mortality within 30 days after surgery for malignant tumors of lung” and “Mortality within 30 days after surgery for malignant tumors of colon” in the context of the findings of the P.Re.Val.E.

Related Activities

Narrative Medicine

Since 2009 the Unit has been involved in initiatives related to Narrative Medicine, promoting training courses, conferences and research projects. Trials aiming to validate clinical-care methodologies for the application of narrations and the arts in oncological clinical practice, targeting different population and setting, have been carried out.

In 2020 “Creativity as a resource. A pilot study on the Integrated Drama Therapy in the supportive care of cancer patients (DIPSO)” started. The objective of the study concerns the validation of a method based on experiential workshops involving breast cancer patients, aiming to improve their empowerment through the use of the arts.

A further clinical trial (EPIMENAT) was approved by the Ethics Committee. The study enrolls patients at the Center for the treatment of Tumor Epilepsy IFO with the aim of evaluating the feasibility and validity of a digital diary set to integrate narration of patients with their clinical data during treatment.

The Unit has continued monitoring, collecting and evaluating data concerning the studies started in previous years: IMPERO (application of narrative medicine in oncological clinical practice: impact on health care professional); AMENAS (application of narrative medicine in patients with sarcoma); TARPEA (a multicentric pilot study involving a three-dimensional evaluation of aromatase inhibitor toxicity in early breast cancer patients: expected, detected and perceived).

Telemedicine

The activity was launched during the first COVID-19 emergency as an urgent and immediately applicable procedure. During the year, following the Lazio Region’s directives on the subject, a multidisciplinary working group on “Specialization and Telemedicine” was set up at the Institute. The Unit is involved in the IFO Task Force of the group, together with the UOC Clinical Engineering and Technologies and Information Systems, in collaboration with DNM Srl, the social start-up supplier of the DNMLAB platform. Activities carried out included: definition and drafting of an operational protocol; creation of virtual outpatients paths based on the existing organization; training of health care professionals and monitoring of activities; adaptation of the paths and tools to regional directives on telemedicine.

Gender medicine

Participation to the IRCCS working table, which contributed to the preparation of the document of the Ministry of Health on the relationship between COVID 19 and gender health.

Participations To Commissions, Committees, Working Groups

• HB-HTA. IFO (Health Technology Assessment) commission.
• CC-CICA. Control Committee of Infections Related to the CC-CICA – IFO.
• OECI: elaboration of data for the self-assessment in the OECI certification process.
• LIMeNar Steering Committee. ISS research project (“Use and application contexts of the guidelines for the use of NARRATIVE MEDICINE in clinical care and associations area)
• SIMeN Membership (Italian Society of Narrative Medicine)
• JCM Guest Editors for a Special Issue: Bone and Soft Tissue Sarcoma.