Italy

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Cancer Centers

Centro di Riferimento Oncologico di Aviano

IRCCS Ospedale Policlinico San Martino

European Institute of Oncology

Fondazione IRCCS- Istituto Nazionale dei Tumori di Milano

Istituto Oncologico Veneto IRCCS-IOV

Humanitas Research Hospital

Istituto Nazionale Tumori -IRCCS 'Fondazione G.Pascale'

Azienda Unità Sanitaria Locale di Reggio Emilia - IRCCS Istituto in Tecnologie Avanzate e Modelli Assistenziali in Oncologia

Istituto Tumori Giovanni Paolo II, Istituto di Ricovero e Cura a Carattere Scientifico

IRCCS Centro di Riferimento Oncologico della Basilicata

Ospedale San Raffaele

Candiolo Cancer Institute

Mediterranean Institute of Oncology

Sacro Cuore - Don Calabria Hospital

IRCCS - Romagna Institute for the Study of Cancer 'Dino Amadori'

Fondazione Policlinico Universitario Agostino Gemelli IRCCS

Istituto Nazionale Tumori Regina Elena & Istituto Dermatologico San Gallicano

Fondazione I.R.C.C.S. Policlinico San Matteo

Administrative or Claims Data

Hospital Discharge Database (SDO)

Registries

I.Stat - Causes of Death

I.Stat - Smoking Habits

Carcinogens Database

Compilation: Italian Association of Cancer Registries (AIRTUM)

Compilation: Open Databases

Clinical Practices Guidelines

Compilation: AIOM Guidelines

Sponsor, manager or home institution: Associazione Italiana di Oncologia Medica (AIOM).

Primary purpose: To improve and standardize clinical practice, offer the best care to patients nationwide, and provide evidence-based reference for national and regional institutions, regulatory bodies, and payers, with a focus on oncology and pain therapy in cancer patients.

Type of information: Clinical recommendations, management, palliative care, quality of life, epidemiology and diagnoses of various types of cancer.

Access to information: List of guidelines [1].

Latest Policymaking Initiatives

Profili di Salute

Sponsor, manager or home institution: Instituto Superiore di Sanità (ISS); Ministry of Health.

Primary purpose: Allow free access to health data displayed in graphics and tables.

Type of information: Mortality by age, gender and cause of death; Admissions by gender, age and discharge diagnosis; tumor incidence by gender, age and disease diagnosis; other indicators.

Data level: National level.

Access to information: Access Information [2].

Reports: Italian Association of Cancer Registries (AIRTUM)

Sponsor, manager or home institution: Italian Association of Cancer Registries (AIRTUM).

Primary purpose: Offer publicly available oncological information to improve cancer management.

Type of information: Reports on incidence of cancer, cancer as cause of death, cancer survival, risk behaviors, and others, in various levels of detail, regional and national, for various cancer types.

Data level: Regional and national level.

Access to information: Access Information [3].

Report: Provisions to guarantee access to palliative care to pain management

Sponsor, manager or home institution: Ministero della Salute.

Primary purpose: To outline the legislative framework and establishment of palliative care networks, ensuring access to palliative care for all citizens, preserving patient dignity, and guaranteeing the quality of life until the end.

Type of information: Place of death for patients diagnosed with cancer; The number of deaths in hospital with a primary diagnosis of cancer; Number of patients with a primary diagnosis of cancer who died in the acute ward of a hospital; Number of deaths with primary diagnosis of cancer in acute wards; Percentage change in the number of deceased by the department with a primary diagnosis of cancer in acute wards; Ratio % between the number of patients admitted to hospices with assistance ended due to death due to cancer and the number of deaths due to cancer; Percentage of cancer patients with hospice admissions; Trend of the percentage distribution of hospice admissions by duration classes for cancer patients; Percentage distribution of some macro services provided in Hospice - cancer patients; Number of deaths from cancer assisted by the palliative care network at home or in hospices on the number of deaths from cancer; Percentage change in the ratio between the annual number of days of effective palliative care assistance provided at home for cancer patients and the number of cancer deaths.

Data level: National and regional level.

Access to information: Access Information [4].

Report: Screening programs in Italy

Sponsor, manager or home institution: Osservatorio Nazionale Screening; Ministero della Salute.

Primary purpose: Assesses annual cancer screening programs in Italy, indicating substantial participation in mammography and cervical screenings, significant progress in colorectal screening, and disparities in coverage between regions.

Type of information: Effective extent of mammography, cervical and colorectal screening; Participation (%) in screenings according to the country of origin; Waiting times; Invitations; Availability of pre-operative diagnosis; Conservative surgery; Total number of persons invited Number of persons participating in the invitation; Acceptance of the invitation; Number of persons examined in the period; Proportion of persons recalled for further investigation; Benign biopsies; Cancer identification rate; Invasive cancer identification rate; Percentage of conservative surgical treatment in invasive tumors; Mammography performed within the last 2 years; Fecal occult blood test programs - Main results in the two-year period; Programs with Rectosigmoidoscopy; Examination for the prevention of colorectal cancer in the recommended times (%) persons; Lesions with CIN2+ histology identified; Introduction of the human papilloma virus (Hpv) test as a screening test; Preventive test coverage in the last 3 years.

Data level: National and regional level.

Access to information: Access Information [5].

Report: EU Country Cancer Profile 2023

Sponsor, manager or home institution: OECD and European Commission.

Primary purpose: To provide reliable data on cancer prevention and care, identifying trends, disparities, and inequalities among EU Member States and regions to guide interventions under Europe's Beating Cancer Plan.

Type of information: National cancer burden; Cancer incidence and mortality; Risk factors for cancer; Early detection programs (screenings); Cancer care performance, The impact of COVID-19 on cancer care.

Data level: National level.

Access to information: Access Information [6].

Cancer-related Patient Associations and Resources

Compilation: ESMO Patient Guides

Sponsor, manager or home institution: European Society for Medical Oncology.

Primary purpose: To translate complex medical language into understandable information for patients.

Available guides: Cancer Treatments During the COVID-19 Pandemic; Cancer Pain; Survival; Cervical Cancer; Endometrial Cancer; Breast Cancer; Ovarian Cancer; Non-small cell lung cancer; Cancer of the Biliary Tracts; Glioma; LAM; Follicular Lymphoma; CML; Multiple Myeloma; Soft Tissue Sarcomas; Sarcomas of Bone; Head and Neck Cancer.

Type of information: Information on each guide varies for each cancer type. Generally, guides provide definitions, explanations of causes, diagnosis, treatment, treatment options, care after treatment, among others.

Access to information: List of guides [7].

Patient Association: Italian GIST Foundation ETS

Primary purpose: To spread knowledge about rare GIST cancers, raise awareness, and improve the diagnostic and therapeutic path for Gastrointestinal Stromal Tumor (GIST) patients while promoting research and providing information to those affected by this disease.

Contact information: Information [8].

Patient Association: NET Italian Association of Patients with Neuroendocrine Tumors

Primary purpose: To promote health education and information about neuroendocrine tumors, provide support to individuals affected by these pathologies, and encourage studies, research, and dissemination of results for the benefit of the community, with a focus on raising awareness of the challenges associated with these tumors.

Contact information: Information [9].

Quality of Life and Palliative Care Research

List of Articles: Quality of Life [10] and Palliative Care [11].