The Right to be Forgotten in the AYA Population: Patients' Experience and Perspectives (Diritto All'Oblio)

Oncologic Disorders Clinical Trial

Official title:

The Right to be Forgotten in the AYA Population: Patients' Experience and Perspectives (Diritto All'Oblio)

Clinical Trial Details — Status: Recruiting

Administrative data

• NCT number: NCT06229535
• Other study ID #: CRO-2023-21
• Status: Recruiting
• Start date: November 16, 2023
• Est. completion date: November 16, 2024

Study information

• Verified date: January 2024
• Source: Centro di Riferimento Oncologico - Aviano
• Contact: Maurizio Mascarin, MD
• Phone: 0434 659 536
• Email: mascarin[@]cro.it
• Is FDA regulated: No
• Study type: Observational

Clinical Trial Summary

Cancer survivors experience a form of social discrimination that is described in numerous areas such as private life, educational and work paths and the achievement of personal goals. Starting from this scenario, more and more national legislative initiatives are emerging to reconcognize the right to be forgotten, defined as the right not to have to report one's, resolved, oncological disease in contact with institutions such as insurance companies, banks or others. The issue of the right to be forgotten is current and new, primarily in the AYA (adolescents and young adults) population. The purpose of this study is to explore and describe the experience of adolescents and young adults affected by previous oncological disease with respect to the issue of the right to be forgotten. In particular, focusing on: - awareness (knowledge of the issue); - significance attributed and subjective perception; - implications/fallouts perceived or experienced on one's present and future history.

Description:

Cancer survivors experience a form of social discrimination that is described in numerous areas such as private life, educational and work paths and the achievement of personal goals. Starting from this scenario, more and more national legislative initiatives are emerging to reconcognize the right to be forgotten, defined as the right not to have to report one's, resolved, oncological disease in contact with institutions such as insurance companies, banks or others. The issue of the right to be forgotten is current and new, primarily in the AYA (adolescents and young adults) population. The purpose of this study is to explore and describe the experience of adolescents and young adults affected by previous oncological disease with respect to the issue of the right to be forgotten. In particular, focusing on: - awareness (knowledge of the issue); - significance attributed and subjective perception; - implications/fallouts perceived or experienced on one's present and future history.

Recruitment information / eligibility

• Status: Recruiting
• Enrollment: 60
• Est. completion date: November 16, 2024
• Est. primary completion date: November 16, 2024
• Gender: All
• Age group: 20 Years and older

Eligibility

Inclusion Criteria:

• Age at diagnosis between (or equal to) 15 and 39 years;
• patients not in active phase of treatment;
• at least 5 years elapsed since diagnosis;
• comprehension and written expressive ability of the Italian language.
• subscription informed consent to the study. Exclusion Criteria: NA

Related Conditions & MeSH terms

• Oncologic Disorders

Locations

Country	Name	City	State
Italy	Centro di Riferimento Oncologico (CRO) di Aviano - IRCCS	Aviano	Pordenone
Italy	IRCCS Ospedale Policlinico San Martino	Genova
Italy	Fondazione IRCCS Istituto Nazionale Tumori	Milano
Italy	Istituto Europeo di Oncologia IRCCS	Milano
Italy	Azienda Ospedaliero-Universitaria di Modena	Modena
Italy	Università degli studi di Milano - Bicocca	Monza
Italy	Università di Palermo	Palermo
Italy	IRCCS, Ospedale Bambino Gesù	Roma
Italy	Ospedale Regina Margherita	Torino

Sponsors (1)

Lead Sponsor	Collaborator
Centro di Riferimento Oncologico - Aviano

Country where clinical trial is conducted

Italy, 

Outcome

Type	Measure	Description	Time frame	Safety issue
Primary	Frequency of participants citing words attributable to the topic of awareness in the text with the aim to explore the experience of adolescents and young adults with prior cancer with respect to the issue of the right to be forgotten.	Frequency with which words attributable to the topic of awareness are expressed in the text	up to 1 year
Primary	Frequency of participants citing words attributable to the thematic area that delineate the architecture of the text about meaning and subjective perception of the right to be forgotten.	Frequency of participants citing words attributable to the thematic area that delineate the architecture of the text about meaning and subjective perception of the right to be forgotten.	up to 1 year
Primary	Frequency of participants citing words attributable to implications/implications perceived or experienced on one's present and future history with respect to the issue of the right to be forgotten.	Frequency of participants citing words attributable to implications/implications perceived or experienced on one's present and future history with respect to the issue of the right to be forgotten.	up to 1 year
Secondary	Frequency of patients with information that can lead to the recognition of the right to be forgotten primarily in the AYA population	Frequency of patients with information that can lead to the recognition of the right to be forgotten primarily in the AYA population measured through indicators that identify this argumentative junction in the text	up to 1 year