Clinical trial NCT06229535: The Right to be Forgotten in the AYA Population: Patients' Experience and Perspectives (Diritto All'Oblio)
Official title: The Right to be Forgotten in the AYA Population: Patients' Experience and Perspectives (Diritto All'Oblio)
Study type: OBSERVATIONAL
Overall status: RECRUITING
Conditions: Oncologic Disorders
Lead sponsor: Centro di Riferimento Oncologico - Aviano
Sponsor class: OTHER
First posted: 2024-01-29
Enrollment: 60
Sex: ALL
Minimum age (years): 20
Standard ages: ADULT
OLDER_ADULT
Observational model: OTHER
Time perspective: CROSS_SECTIONAL
Sampling method: NON_PROBABILITY_SAMPLE
Study population: 50-60 subjects afferent to pediatric and adult oncology centers, off therapy for at least 1 year and with at least 5 years since the diagnosis.

Brief 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.

Detailed 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.

Eligibility criteria: 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

Primary outcomes:
measure: 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.
timeFrame: up to 1 year
measure: 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.
timeFrame: up to 1 year
measure: 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.
timeFrame: up to 1 year
Secondary outcomes:
measure: Frequency of patients with information that can lead to the recognition of the right to be forgotten primarily in the AYA population
timeFrame: up to 1 year
Other outcomes:
Locations:
city: Aviano
country: Italy
facility: Centro di Riferimento Oncologico (CRO) di Aviano - IRCCS
state: Pordenone
city: Genova
country: Italy
facility: IRCCS Ospedale Policlinico San Martino
city: Milano
country: Italy
facility: Fondazione IRCCS Istituto Nazionale Tumori
city: Milano
country: Italy
facility: Istituto Europeo di Oncologia IRCCS
city: Modena
country: Italy
facility: Azienda Ospedaliero-Universitaria di Modena
city: Monza
country: Italy
facility: Università degli studi di Milano - Bicocca
city: Palermo
country: Italy
facility: Università di Palermo
city: Roma
country: Italy
facility: IRCCS, Ospedale Bambino Gesù
city: Torino
country: Italy
facility: Ospedale Regina Margherita
Study officials:
affiliation: Centro di Riferimento Oncologico di Aviano (CRO) - IRCCS
name: Maurizio Mascarin, MD
role: PRINCIPAL_INVESTIGATOR
affiliation: Centro di Riferimento Oncologico di Aviano (CRO) - IRCCS
name: Francesca Bomben, Dr
role: PRINCIPAL_INVESTIGATOR
References: