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

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.

Study Overview

• Status: Recruiting
• Conditions: Oncologic Disorders

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.

• Study Type: Observational
• Enrollment (Estimated): 60

Contacts and Locations

• Study Contact: Name: Maurizio Mascarin, MD; Phone Number: 0434 659 536; Email: mascarin@cro.it

Study Locations

• Italy
  • Genova, Italy
    • Recruiting
    • IRCCS Ospedale Policlinico San Martino
    • Contact: Matteo Lambertini, MD, PhD
    • Principal Investigator: Matteo Lambertini, MD, PhD
  • Milano, Italy
    • Recruiting
    • Fondazione IRCCS Istituto Nazionale Tumori
    • Contact: Andrea Ferrari, MD
    • Principal Investigator: Andrea Ferrari, MD
  • Milano, Italy
    • Recruiting
    • Istituto Europeo di Oncologia IRCCS
    • Contact: Fedro Peccatori, MD, PhD
    • Principal Investigator: Fedro Peccatori, MD, PhD
  • Modena, Italy
    • Recruiting
    • Azienda Ospedaliero-Universitaria di Modena
    • Contact: Angela Toss, MD, PhD
    • Principal Investigator: Angela Toss, MD, PhD
  • Monza, Italy
    • Recruiting
    • Università degli Studi di Milano - Bicocca
    • Contact: Marta Canesi, Dr
    • Principal Investigator: Marta Canesi, Dr
  • Palermo, Italy
    • Recruiting
    • Università di Palermo
    • Contact: Lorena Incorvaia, MD, PhD
    • Principal Investigator: Lorena Incorvaia, MD, PhD
  • Roma, Italy
    • Recruiting
    • IRCCS, Ospedale Bambino Gesù
    • Contact: Giuseppe Maria Milano, MD, PhD
    • Principal Investigator: Giuseppe Maria Milano, MD, PhD
  • Torino, Italy
    • Recruiting
    • Ospedale Regina Margherita
    • Contact: Paola Quarello, MD, PhD
    • Principal Investigator: Paola Quarello, MD, PhD
  • Pordenone
    • Aviano, Pordenone, Italy, 33081
      • Recruiting
      • Centro di Riferimento Oncologico (CRO) di Aviano - IRCCS
      • Principal Investigator: Maurizio Mascarin, MD
      • Contact: Maurizio Mascarin; Phone Number: 0434659536; Email: mascarin@cro.it
      • Principal Investigator: Francesca Bomben, Dr

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Adult; Older Adult
• Accepts Healthy Volunteers: N/A

• 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.

Description

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

Study Plan

How is the study designed?

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
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 Outcome Measures

Outcome Measure	Measure Description	Time Frame
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

Collaborators and Investigators

• Sponsor: Centro di Riferimento Oncologico - Aviano
• Investigators: Principal Investigator: Maurizio Mascarin, MD, Centro di Riferimento Oncologico di Aviano (CRO) - IRCCS; Principal Investigator: Francesca Bomben, Dr, Centro di Riferimento Oncologico di Aviano (CRO) - IRCCS

Study record dates

Study Major Dates

• Study Start (Actual): November 16, 2023
• Primary Completion (Estimated): November 16, 2024
• Study Completion (Estimated): November 16, 2024

Study Registration Dates

• First Submitted: December 12, 2023
• First Submitted That Met QC Criteria: January 19, 2024
• First Posted (Actual): January 29, 2024

Study Record Updates

• Last Update Posted (Actual): January 29, 2024
• Last Update Submitted That Met QC Criteria: January 19, 2024
• Last Verified: January 1, 2024

More Information

Terms related to this study

• Other Study ID Numbers: CRO-2023-21

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No