Oncologic DisordersNCT06229535
The Right to be Forgotten in the AYA Population: Patients' Experience and Perspectives (Diritto All'Oblio)
An observational study of Oncologic Disorders, run by Centro di Riferimento Oncologico - Aviano at 9 sites in Italy.
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. Read more about this study
- Who is it for?
- Ages 20 years and older
- Conditions the study is for
- Oncologic Disorders
- How many people
- 60 participants
- Where
- 9 sitesItaly
- Study dates
- 16 Nov 2023to 16 Nov 2024
- Phase
- Observational
- Are there results?
- None posted in the registry
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 20 years and older
- All sexes
- Adult, Older adult
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.
Who may be able to join
- 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.
Who cannot join
None listed.
Trial locations and contacts
9 sites in 1 country.
9 sites in 1 country
Italy9 sites, 9 recruiting
- Recruiting
Centro di Riferimento Oncologico (CRO) di Aviano - IRCCS
Aviano, Pordenone, 33081
Maurizio Mascarin, 0434659536, mascarin@cro.it
Maurizio Mascarin, MD
- Recruiting
IRCCS Ospedale Policlinico San Martino
Genova
Matteo Lambertini, MD, PhD
Matteo Lambertini, MD, PhD
- Recruiting
Fondazione IRCCS Istituto Nazionale Tumori
Milan
Andrea Ferrari, MD
Andrea Ferrari, MD
- Recruiting
Istituto Europeo di Oncologia IRCCS
Milan
Fedro Peccatori, MD, PhD
Fedro Peccatori, MD, PhD
- Recruiting
Azienda Ospedaliero-Universitaria di Modena
Modena
Angela Toss, MD, PhD
Angela Toss, MD, PhD
- Recruiting
Università degli studi di Milano - Bicocca
Monza
Marta Canesi, Dr
Marta Canesi, Dr
- Recruiting
Università di Palermo
Palermo
Lorena Incorvaia, MD, PhD
Lorena Incorvaia, MD, PhD
- Recruiting
IRCCS, Ospedale Bambino Gesù
Roma
Giuseppe Maria Milano, MD, PhD
Giuseppe Maria Milano, MD, PhD
- Recruiting
Ospedale Regina Margherita
Torino
Paola Quarello, MD, PhD
Paola Quarello, MD, PhD
About this study
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.
Read the 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.
- Conditions
- Oncologic Disorders
What is being measured
The primary outcome is the main question the study is designed to answer.
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
Measured: 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.
Measured: 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.
Measured: 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
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
Measured: up to 1 year
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted29 Jan 2024
- Study start16 Nov 2023
- Primary completion16 Nov 2024 (estimated)
- Study completion16 Nov 2024 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Oncologic DisordersStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Other
- Time perspective
- Cross-sectional
- Enrolment
- 60 participants (estimated)
Sponsor and investigators
- Lead sponsor
- Centro di Riferimento Oncologico - Aviano
- Sponsor type
- University, hospital or other
- Responsible party
- Sponsor
- Investigators
- Maurizio Mascarin, MD, Principal investigator, Centro di Riferimento Oncologico di Aviano (CRO) - IRCCSFrancesca Bomben, Dr, Principal investigator, Centro di Riferimento Oncologico di Aviano (CRO) - IRCCS
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT06229535
- Sponsor's protocol ID
- CRO-2023-21
- Status last verified
- Jan 2024
- First submitted
- 12 Dec 2023
- Last updated
- 29 Jan 2024
- Results posted
- No
- Data monitoring committee
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
Study at a glance
From the registry record, last updated by the sponsor on 29 Jan 2024. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- The Right to be Forgotten in the AYA Population: Patients' Experience and Perspectives (Diritto All'Oblio)
- ClinicalTrials.gov ID
- NCT06229535
- Acronym / sponsor ID
- CRO-2023-21
- Conditions
- Oncologic Disorders
- Study type
- Observational
- Recruitment status
- Unknown status
- Enrolment
- 60 participants (estimated)
- Lead sponsor
- Centro di Riferimento Oncologico - AvianoUniversity, hospital or other
- Study start
- 16 Nov 2023 (actual)
- Primary completion
- 16 Nov 2024 (estimated)
- Study completion
- 16 Nov 2024 (estimated)
- First posted
- 29 Jan 2024 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
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.
Study design
- Observational model
- Other
- Time perspective
- Cross-sectional
Who may qualify
- Ages
- 20 years and older
- Sex
- All
- Age groups
- Adult, Older adult
- 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.
Key inclusion criteria (5 listed)
- 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.
Key exclusion criteria (0 listed)
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Primary outcome
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
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.
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.
1 secondary outcome
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
Results and safety
Results are not available in the source record.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 29 Jan 2024.
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part. This study is not recruiting at the moment.
Maurizio Mascarin, MD principal investigator
Centro di Riferimento Oncologico di Aviano (CRO) - IRCCS
Francesca Bomben, Dr principal investigator
Centro di Riferimento Oncologico di Aviano (CRO) - IRCCS
9 sites in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Oncologic Disorders, run by Centro di Riferimento Oncologico - Aviano at 9 sites in Italy.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 5 inclusion and 0 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: status not confirmed, as of the sponsor's last update on 29 Jan 2024. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 9 sites in Italy. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
Results are not available in the source record.
How can a doctor refer a patient or contact the research team?
Contact Maurizio Mascarin, MD (0434 659 536, mascarin@cro.it), or a site near the patient. AzTrials does not enrol participants or take referrals.
What does the primary outcome 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. (time frame: up to 1 year). The study lists 3 primary outcomes in all. It is what the study was designed to measure, not a finding.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 29 Jan 2024.