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

NCT06229535 | Unknown

• 1 other identifier: CRO-2023-21
• Study Type: observational
• Target: 60
• Locations: 1 country
• Sites: 9

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.

Conditions

Oncologic Disorders

Outcome Measures

Primary Outcomes (3)

• 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

• 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

• 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 Outcomes (1)

• Frequency of patients with information that can lead to the recognition of the right to be forgotten primarily in the AYA population

  up to 1 year

Eligibility Criteria

• Age: 20 Years+
• Sex: all
• Age Groups: Adult (18-64), Older Adult (65+)
• 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.

You may qualify if:

• 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.

Sponsors & Collaborators

• Centro di Riferimento Oncologico - Aviano: lead

Study Sites (9)

Centro di Riferimento Oncologico (CRO) di Aviano - IRCCS

Aviano, Pordenone, 33081, Italy

RECRUITING

IRCCS Ospedale Policlinico San Martino

Genova, Italy

RECRUITING

Fondazione IRCCS Istituto Nazionale Tumori

Milan, Italy

RECRUITING

Istituto Europeo di Oncologia IRCCS

Milan, Italy

RECRUITING

Azienda Ospedaliero-Universitaria di Modena

Modena, Italy

RECRUITING

Università degli studi di Milano - Bicocca

Monza, Italy

RECRUITING

Università di Palermo

Palermo, Italy

RECRUITING

IRCCS, Ospedale Bambino Gesù

Roma, Italy

RECRUITING

Ospedale Regina Margherita

Torino, Italy

RECRUITING

Study Officials

• Maurizio Mascarin, MD

  Centro di Riferimento Oncologico di Aviano (CRO) - IRCCS

  PRINCIPAL INVESTIGATOR

• Francesca Bomben, Dr

  Centro di Riferimento Oncologico di Aviano (CRO) - IRCCS

  PRINCIPAL INVESTIGATOR

Central Study Contacts

Maurizio Mascarin, MD

CONTACT

0434 659 536; mascarin@cro.it

Study Design

• Study Type: observational
• Observational Model: OTHER
• Time Perspective: CROSS SECTIONAL
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: December 12, 2023
• First Posted: January 29, 2024
• Study Start: November 16, 2023
• Primary Completion: November 16, 2024
• Study Completion: November 16, 2024
• Last Updated: January 29, 2024

Record last verified: 2024-01

Locations

IT (9)