CRASLNa3Sud

Description

General Design

Type

Registry

Data collection description

Organization The working methodology of the register, now consolidated in many population registers, is based on the temporal and orderly succession of survey activities with "linkage" strategies. It makes use of the integrated coding of healthcare sources, i.e. automated procedures that allow, through appropriate software, to distinguish and select the relevant information present in healthcare flows. Furthermore, their integration with other independent flows is carried out and finally we proceed to identify, pre-populate and make available for manual verification, computerized forms containing a mass of data on possible new tumor diagnoses already codified. The activity of the Registry operators starts from the outcome of the automated linkage and pre-coding procedures, verifies its completeness and quality and integrates it where necessary with further information derived from clinical documentation. The skills of the operators and in-depth knowledge of new recording techniques are a fundamental requirement to ensure high levels of quality. Algorithms for reading the text of the reports were adopted as a solution as they are able to extract, even from plain text, the information necessary for coding, allowing even non-codified reports from non-codified pathological anatomy laboratories to be coded. The automated import of data from the main information flows is therefore accompanied by a manual entry procedure. In the first case, every possible new tumor notification is carefully prepared by the software and recorded with a “waiting” status. It is subsequently checked by an expert operator who proceeds to find all the documentation that can confirm or exclude the notification of the tumor in question. In the second case, the operator manually inserts cases obtained from other possible information sources

Record trigger

hospital discharge,specialist encounter, dispensation of a medicinal product, mortality registry, death certificate, and pathology reports

Date last refresh

2022-12-31

Start/End data collection

2008 until 2020

PID

EUNAP

Population

Countries

Italy

Number of participants

1100000

Number of participants with samples

0

Population age groups

All ages

Organisations

• Institute for Experimental Endocrinology and Oncology (IEOS)

  Italy

  http://www.ieos.cnr.it/

Contributors

• dr.  mario fuscomariofusco2@virgilio.it

  Primary contact

• dr.  valerio Ciullov.ciullo@aslnapoli3sud.it

  Data manager

Networks

• 

  European Open Science Cloud for Cancer Use Cases

  EOSC4Cancer will make diverse types of cancer data accessible: genomics, imaging, medical, clinical, environmental and socio-economic. It will use and enhance federated and interoperable systems for securely identifying, sharing, processing and reusing FAIR data across borders and offer them via community-driven analysis environments. Cancer’s complex nature requires integration of advanced research data across national boundaries to enable progress. The Horizon Europe mission board for cancer has identified access to data, knowledge, and digital services – accessible across the European Research Area through federated infrastructures – as a key enabling condition for success. The better we organise cancer data across Europe, the better and faster we can bring the fruits of new biological and technical innovations to the benefit of EU citizens/patients. EOSC4Cancer’s well curated data sets will be essential input for reproducible and robust analytics and computational methods – including machine learning and artificial intelligence. EOSC4Cancer’s five use cases will cover the patient journey from cancer prevention over diagnosis to treatment, laying the foundation of data trajectories and workflows for future European Cancer Mission projects. EOSC4Cancer brings together a consortium of 29 organisations from 13 countries, including cancer research centres, research infrastructures, leading research groups, hospitals, and supercomputing centres. To make the developments sustainable, EOSC4Cancer will leverage the partners’ research infrastructures partners and the EOSC ecosystem. It will also serve the European Cancer Mission, by engaging with large international coalitions (e.g., ICGC-Argo, GA4GH, 1+MG/B1MG, Cancer Core Europe, European Cancer Information System, European Network of Cancer Registries, Innovative Partnership for Action Against Cancer Joint Action) and patients/survivors associations.

  WebsiteNetwork detailsCatalogue

Documentation