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

January 19, 2024 updated by: Centro di Riferimento Oncologico - Aviano

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

Status

Indicates the current recruitment status or the expanded access status.
Recruiting

Conditions

Conditions

The disease, disorder, syndrome, illness, or injury that is being studied. On ClinicalTrials.gov, conditions may also include other health-related issues, such as lifespan, quality of life, and health risks.

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

Study Type

Describes the nature of a clinical study. Study types include interventional studies (also called clinical trials), observational studies (including patient registries), and expanded access.
Observational

Enrollment (Estimated)

Enrollment

The number of participants in a clinical study. The "anticipated" enrollment is the target number of participants that the researchers need for the study.
60

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Contact

Study Contact

The name and contact information for the person who can answer enrollment questions for a clinical study. Each location where the study is being conducted may also have a specific contact, who may be better able to answer those questions.
  • 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:
        • Principal Investigator:
          • Francesca Bomben, Dr

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Eligibility Criteria

The key requirements that people who want to participate in a clinical study must meet or the characteristics they must have. Eligibility criteria consist of both inclusion criteria (which are required for a person to participate in the study) and exclusion criteria (which prevent a person from participating). Types of eligibility criteria include whether a study accepts healthy volunteers, has age or age group requirements, or is limited by sex.

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

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

What is the study measuring?

Primary Outcome Measures

Primary Outcome Measures

In a clinical study's protocol, the planned outcome measure that is the most important for evaluating the effect of an intervention/treatment. Most clinical studies have one primary outcome measure, but some have more than one.
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.
Time Frame: up to 1 year
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.
Time Frame: 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.
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.
Time Frame: 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.
up to 1 year

Secondary Outcome Measures

Secondary Outcome Measures

In a clinical study's protocol, a planned outcome measure that is not as important as the primary outcome measure for evaluating the effect of an intervention but is still of interest. Most clinical studies have more than one secondary outcome measure.
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
Time Frame: up to 1 year
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

This is where you will find people and organizations involved with this study.

Sponsor

Sponsor

The organization or person who initiates the study and who has authority and control over the study.
Centro di Riferimento Oncologico - Aviano

Investigators

Investigators

A researcher involved in a clinical study. Related terms include site principal investigator, site sub-investigator, study chair, study director, and study principal investigator.
  • 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

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start (Actual)

Study Start

The actual date on which the first participant was enrolled in a clinical study. The "anticipated" study start date is the date that the researchers think will be the study start date.
November 16, 2023

Primary Completion (Estimated)

Primary Completion

The date on which the last participant in a clinical study was examined or received an intervention to collect final data for the primary outcome measure. Whether the clinical study ended according to the protocol or was terminated does not affect this date. For clinical studies with more than one primary outcome measure with different completion dates, this term refers to the date on which data collection is completed for all the primary outcome measures. The "anticipated" primary completion date is the date that the researchers think will be the primary completion date for the study.
November 16, 2024

Study Completion (Estimated)

Study Completion

The date on which the last participant in a clinical study was examined or received an intervention/treatment to collect final data for the primary outcome measures, secondary outcome measures, and adverse events (that is, the last participant's last visit). The "anticipated" study completion date is the date that the researchers think will be the study completion date.
November 16, 2024

Study Registration Dates

First Submitted

First Submitted

The date on which the study sponsor or investigator first submitted a study record to ClinicalTrials.gov. There is typically a delay of a few days between the first submitted date and the record's availability on ClinicalTrials.gov (the first posted date).
December 12, 2023

First Submitted That Met QC Criteria

First Submitted That Met QC Criteria

The date on which the study sponsor or investigator first submits a study record that is consistent with National Library of Medicine (NLM) quality control (QC) review criteria. The sponsor or investigator may need to revise and submit a study record one or more times before NLM's QC review criteria are met. It is the responsibility of the sponsor or investigator to ensure that the study record is consistent with the NLM QC review criteria.
January 19, 2024

First Posted (Actual)

First Posted

The date on which the study record was first available on ClinicalTrials.gov after National Library of Medicine (NLM) quality control (QC) review has concluded. There is typically a delay of a few days between the date the study sponsor or investigator submitted the study record and the first posted date.
January 29, 2024

Study Record Updates

Last Update Posted (Actual)

Last Update Posted

The most recent date on which changes to a study record were made available on ClinicalTrials.gov. There may be a delay between when the changes were submitted to ClinicalTrials.gov by the study's sponsor or investigator (the last update submitted date) and the last update posted date.
January 29, 2024

Last Update Submitted That Met QC Criteria

Last Update Submitted That Met QC Criteria

The most recent date on which the study sponsor or investigator submitted changes to a study record that are consistent with National Library of Medicine (NLM) quality control (QC) review criteria. It is the responsibility of the sponsor or investigator to ensure that the study record is consistent with the NLM QC review criteria.
January 19, 2024

Last Verified

Last Verified

The most recent date on which the study sponsor or investigator confirmed the information about a clinical study on ClinicalTrials.gov as accurate and current. If a study with a recruitment status of recruiting; not yet recruiting; or active, not recruiting has not been confirmed within the past 2 years, the study's recruitment status is shown as unknown.
January 1, 2024

More Information

Terms related to this study

Other Study ID Numbers

Other Study ID Numbers

Identifiers or ID numbers other than the NCT number that are assigned to a clinical study by the study's sponsor, funders, or others. These numbers may include unique identifiers from other trial registries and National Institutes of Health grant 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

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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