A Web-Based Program (Kindred) to Improve the Understanding of Genetic Cancer Risk and Cancer Genetic Testing in African American Families
Ориентир для пациента и семьи
Простыми словами
Автоматическая сводка по структурированным данным реестра. Она помогает сориентироваться, но не заменяет официальный протокол или оценку врача.
- Что изучают
- В протоколе указаны: Discussion, Internet-Based Intervention, Internet-Based Intervention, Survey Administration.
- Кому может быть актуально
- Состояния в реестре: BRCA1-Related Hereditary Breast and Ovarian Cancer Syndrome, BRCA2-Related Hereditary Breast and Ovarian Cancer Syndrome, Hereditary Neoplastic Syndrome, Lynch Syndrome. Базовые параметры: от 18 лет · Все.
- Что важно проверить
- Возраст, диагноз и пол — только базовые ориентиры. Предыдущее лечение, анализы и другие обязательные условия указаны ниже в критериях участия.
- Где проводится
- США
- Следующий шаг
- Сохраните исследование, покажите его лечащему врачу и уточните актуальный статус у исследовательского центра. Расходы, документы и поездка →
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Официальное название
Kindred: Family Centered Approaches to Promoting Cascade Screening for Hereditary Cancer Syndromes Among African Americans
Обзор
This clinical trial studies whether a web-based program, Kindred, works to improve the understanding of genetic cancer risk and cancer genetic testing in African American families. Between 5% and 10% of all cancers are caused by genetic changes that are hereditary, which means that they run in families. Some kinds of cancer or a family history of cancer means individuals are more likely to have a genetic change. If a genetic change is identified in a family, other relatives can choose to undergo hereditary cancer genetic testing to better understand their cancer risk. In families where a genetic change is not identified, or results are uncertain, relatives may also benefit from discussing their cancer risk with providers and, in some cases, getting hereditary cancer genetic testing themselves. Research has shown that African Americans are less likely than other racial groups to engage in cancer genetic testing. Kindred is an online tool that provides information so individuals can learn about their cancer genetic test results, how cancer genetic testing can help individuals and families understand their overall cancer risk (and strategies for reducing risk), and ways to talk with each other about cancer risk and health. This may be an effective way to improve the understanding of genetic cancer risk and cancer genetic testing in African American families.
Вмешательства
- Другое Discussion
Ancillary studies - Другое Internet-Based Intervention
Receive access to the Kindred web-based portal - Другое Internet-Based Intervention
Share information and invite relatives - Другое Survey Administration
Ancillary studies - Поведенческое Telephone-Based Intervention
Receive check-in calls
Первичные конечные точки
- Recruitment rates (Feasibility) [Срок оценки: Up to 2 years]
- Retention rates (Feasibility) [Срок оценки: Up to 2 years]
- Reasons for enrollment (Feasibility) [Срок оценки: Up to 2 years]
- Reasons for ineligibility (Feasibility) [Срок оценки: Up to 2 years]
- Reasons for dropout and withdrawal (Feasibility) [Срок оценки: Up to 2 years]
- Ease and process of implementing study procedures (Feasibility) [Срок оценки: Up to 2 years]
Вторичные конечные точки (2)
- Completion of cascade testing [Срок оценки: Up to 9 months]
- Dissemination of testing results [Срок оценки: Baseline up to 9 months]
Критерии участия
Критерии включения
- PROBANDS: Evaluation in the past one-year at the Breast and Ovarian Cancer Risk Evaluation Clinic (BOCRE) or Cancer Genetics Clinic, both located at the University of Michigan (U-M) Rogel Cancer Center who are positive for hereditary breast and ovarian cancer syndrome (HBOC) (BRCA1, BRCA2) or Lynch Syndrome (MLH1, MSH2, MSH6, PMS2, EPCAM); indeterminate negative; or variants of uncertain clinical significance (VUS). If more than one biological relative is known to have received an evaluation for and or completed germline testing for cancer risk, the relative who was evaluated the longest time ago to align with the tradition definition of a proband as defined by the National Cancer Institute (NCI), i.e., the first person identified as possibility having a genetic disorder and who may receive counseling or testing
- PROBANDS: >= 18-years-old
- PROBANDS: Completed genetic testing for hereditary cancer syndromes, regardless of results
- PROBANDS: Able to speak and read English
- PROBANDS: Access to the internet
- PROBANDS: Identifies as African American or Black (may have additional race or ethnicity identities)
- RELATIVES: Biological relative of enrolled proband, regardless of testing completion or timing of testing
- RELATIVES: >= 18 years old
- RELATIVES: Able to speak and read English
- RELATIVES: Access to the internet
Критерии исключения
- PROBANDS: No evaluation at U-M or other facility, or evaluation was more than one year ago, or received an evaluation more recently than the relative
- PROBANDS: Under 18-years-old
- PROBANDS: Did not receive cancer genetic testing
- PROBANDS: Does not speak or read English
- PROBANDS: Does not have internet access
- PROBANDS: Does not identify as African American or Black
- RELATIVES: Not a biological relative of proband
- RELATIVES: Under 18-years-old
- RELATIVES: Does not speak or read English
- RELATIVES: Does not have internet access
Критерии приведены из реестра в оригинале (на английском). Окончательную оценку соответствия проводит исследовательский центр.
Здоровые добровольцы: Да
Дизайн исследования
- Распределение
- Нерандомизированное
- Модель
- Последовательный дизайн
- Маскирование
- Открытое
- Основная цель
- Организация здравоохранения
Центры проведения
США · 1 центр
- University of Michigan Rogel Cancer Center — Ann Arbor
Идентификаторы
NCT: NCT07542405 · UMCC 2024.127 · NCI-2026-02088 · HUM00265216 · K01CA255137