Ignite Creation Date:
2025-12-24 @ 10:37 PM
Ignite Modification Date:
2025-12-28 @ 7:10 AM
Study NCT ID:
NCT06229535
Status:
RECRUITING
Last Update Posted:
2024-01-29
First Post:
2023-12-12
Is Gene Therapy:
True
Has Adverse Events:
False
Brief Title:
The Right to be Forgotten in the AYA Population: Patients' Experience and Perspectives (Diritto All'Oblio)
Sponsor:
Organization:
Raw JSON
{'hasResults': False, 'derivedSection': {'miscInfoModule': {'versionHolder': '2025-12-24'}}, 'protocolSection': {'designModule': {'studyType': 'OBSERVATIONAL', 'designInfo': {'timePerspective': 'CROSS_SECTIONAL', 'observationalModel': 'OTHER'}, 'enrollmentInfo': {'type': 'ESTIMATED', 'count': 60}, 'patientRegistry': False}, 'statusModule': {'overallStatus': 'RECRUITING', 'startDateStruct': {'date': '2023-11-16', 'type': 'ACTUAL'}, 'expandedAccessInfo': {'hasExpandedAccess': False}, 'statusVerifiedDate': '2024-01', 'completionDateStruct': {'date': '2024-11-16', 'type': 'ESTIMATED'}, 'lastUpdateSubmitDate': '2024-01-19', 'studyFirstSubmitDate': '2023-12-12', 'studyFirstSubmitQcDate': '2024-01-19', 'lastUpdatePostDateStruct': {'date': '2024-01-29', 'type': 'ACTUAL'}, 'studyFirstPostDateStruct': {'date': '2024-01-29', 'type': 'ACTUAL'}, 'primaryCompletionDateStruct': {'date': '2024-11-16', 'type': 'ESTIMATED'}}, 'outcomesModule': {'primaryOutcomes': [{'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', 'description': 'Frequency with which words attributable to the topic of awareness are expressed in the text'}, {'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', 'description': '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.'}, {'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', 'description': "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."}], 'secondaryOutcomes': [{'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', 'description': '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'}]}, 'oversightModule': {'oversightHasDmc': False, 'isFdaRegulatedDrug': False, 'isFdaRegulatedDevice': False}, 'conditionsModule': {'conditions': ['Oncologic Disorders']}, 'descriptionModule': {'briefSummary': "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:\n\n* awareness (knowledge of the issue);\n* significance attributed and subjective perception;\n* implications/fallouts perceived or experienced on one's present and future history.", 'detailedDescription': "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:\n\n* awareness (knowledge of the issue);\n* significance attributed and subjective perception;\n* implications/fallouts perceived or experienced on one's present and future history."}, 'eligibilityModule': {'sex': 'ALL', 'stdAges': ['ADULT', 'OLDER_ADULT'], 'minimumAge': '20 Years', 'samplingMethod': 'NON_PROBABILITY_SAMPLE', 'studyPopulation': '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.', 'eligibilityCriteria': 'Inclusion Criteria:\n\n* Age at diagnosis between (or equal to) 15 and 39 years;\n* patients not in active phase of treatment;\n* at least 5 years elapsed since diagnosis;\n* comprehension and written expressive ability of the Italian language.\n* subscription informed consent to the study.\n\nExclusion Criteria: NA'}, 'identificationModule': {'nctId': 'NCT06229535', 'briefTitle': "The Right to be Forgotten in the AYA Population: Patients' Experience and Perspectives (Diritto All'Oblio)", 'organization': {'class': 'OTHER', 'fullName': 'Centro di Riferimento Oncologico - Aviano'}, 'officialTitle': "The Right to be Forgotten in the AYA Population: Patients' Experience and Perspectives (Diritto All'Oblio)", 'orgStudyIdInfo': {'id': 'CRO-2023-21'}}, 'contactsLocationsModule': {'locations': [{'zip': '33081', 'city': 'Aviano', 'state': 'Pordenone', 'status': 'RECRUITING', 'country': 'Italy', 'contacts': [{'name': 'Maurizio Mascarin', 'role': 'CONTACT', 'email': 'mascarin@cro.it', 'phone': '0434659536'}, {'name': 'Maurizio Mascarin, MD', 'role': 'PRINCIPAL_INVESTIGATOR'}, {'name': 'Francesca Bomben, Dr', 'role': 'PRINCIPAL_INVESTIGATOR'}], 'facility': 'Centro di Riferimento Oncologico (CRO) di Aviano - IRCCS', 'geoPoint': {'lat': 46.07056, 'lon': 12.59472}}, {'city': 'Genova', 'status': 'RECRUITING', 'country': 'Italy', 'contacts': [{'name': 'Matteo Lambertini, MD, PhD', 'role': 'CONTACT'}, {'name': 'Matteo Lambertini, MD, PhD', 'role': 'PRINCIPAL_INVESTIGATOR'}], 'facility': 'IRCCS Ospedale Policlinico San Martino', 'geoPoint': {'lat': 45.21604, 'lon': 11.87211}}, {'city': 'Milan', 'status': 'RECRUITING', 'country': 'Italy', 'contacts': [{'name': 'Andrea Ferrari, MD', 'role': 'CONTACT'}, {'name': 'Andrea Ferrari, MD', 'role': 'PRINCIPAL_INVESTIGATOR'}], 'facility': 'Fondazione IRCCS Istituto Nazionale Tumori', 'geoPoint': {'lat': 42.78235, 'lon': 12.59836}}, {'city': 'Milan', 'status': 'RECRUITING', 'country': 'Italy', 'contacts': [{'name': 'Fedro Peccatori, MD, PhD', 'role': 'CONTACT'}, {'name': 'Fedro Peccatori, MD, PhD', 'role': 'PRINCIPAL_INVESTIGATOR'}], 'facility': 'Istituto Europeo di Oncologia IRCCS', 'geoPoint': {'lat': 42.78235, 'lon': 12.59836}}, {'city': 'Modena', 'status': 'RECRUITING', 'country': 'Italy', 'contacts': [{'name': 'Angela Toss, MD, PhD', 'role': 'CONTACT'}, {'name': 'Angela Toss, MD, PhD', 'role': 'PRINCIPAL_INVESTIGATOR'}], 'facility': 'Azienda Ospedaliero-Universitaria di Modena', 'geoPoint': {'lat': 44.64783, 'lon': 10.92539}}, {'city': 'Monza', 'status': 'RECRUITING', 'country': 'Italy', 'contacts': [{'name': 'Marta Canesi, Dr', 'role': 'CONTACT'}, {'name': 'Marta Canesi, Dr', 'role': 'PRINCIPAL_INVESTIGATOR'}], 'facility': 'Università degli studi di Milano - Bicocca', 'geoPoint': {'lat': 45.58005, 'lon': 9.27246}}, {'city': 'Palermo', 'status': 'RECRUITING', 'country': 'Italy', 'contacts': [{'name': 'Lorena Incorvaia, MD, PhD', 'role': 'CONTACT'}, {'name': 'Lorena Incorvaia, MD, PhD', 'role': 'PRINCIPAL_INVESTIGATOR'}], 'facility': 'Università di Palermo', 'geoPoint': {'lat': 38.1166, 'lon': 13.3636}}, {'city': 'Roma', 'status': 'RECRUITING', 'country': 'Italy', 'contacts': [{'name': 'Giuseppe Maria Milano, MD, PhD', 'role': 'CONTACT'}, {'name': 'Giuseppe Maria Milano, MD, PhD', 'role': 'PRINCIPAL_INVESTIGATOR'}], 'facility': 'IRCCS, Ospedale Bambino Gesù', 'geoPoint': {'lat': 44.99364, 'lon': 11.10642}}, {'city': 'Torino', 'status': 'RECRUITING', 'country': 'Italy', 'contacts': [{'name': 'Paola Quarello, MD, PhD', 'role': 'CONTACT'}, {'name': 'Paola Quarello, MD, PhD', 'role': 'PRINCIPAL_INVESTIGATOR'}], 'facility': 'Ospedale Regina Margherita', 'geoPoint': {'lat': 44.88856, 'lon': 11.99138}}], 'centralContacts': [{'name': 'Maurizio Mascarin, MD', 'role': 'CONTACT', 'email': 'mascarin@cro.it', 'phone': '0434 659 536'}], 'overallOfficials': [{'name': 'Maurizio Mascarin, MD', 'role': 'PRINCIPAL_INVESTIGATOR', 'affiliation': 'Centro di Riferimento Oncologico di Aviano (CRO) - IRCCS'}, {'name': 'Francesca Bomben, Dr', 'role': 'PRINCIPAL_INVESTIGATOR', 'affiliation': 'Centro di Riferimento Oncologico di Aviano (CRO) - IRCCS'}]}, 'sponsorCollaboratorsModule': {'leadSponsor': {'name': 'Centro di Riferimento Oncologico - Aviano', 'class': 'OTHER'}, 'responsibleParty': {'type': 'SPONSOR'}}}}