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A Web-Based Program (Kindred) to Improve the Understanding of Genetic Cancer Risk and Cancer Genetic Testing in African American Families

Kindred: Family Centered Approaches to Promoting Cascade Screening for Hereditary Cancer Syndromes Among African Americans

Who can join

As published by the study on ClinicalTrials.gov. "Not stated" means the study hasn't said — ask the study team.

Age
18 Years and older
Sex
All sexes
Healthy volunteers
Accepted
Compensation
Not stated

Other requirements are listed under Eligibility below. Only the study team can confirm whether you can join.

What to expect

No one can promise a trial will help you personally — that is what the research is trying to find out.

What participation involves

Not stated in the study description — ask the study team about visits and procedures.

Compensation
Not stated
  • Study-related exams and procedures are typically provided at no cost. This is how many trials work in general — confirm the details for this study with the study team.
  • Participants are monitored closely by the research team throughout the study.
  • Some participants may receive access to an investigational treatment, which is still being studied.
  • Your participation helps researchers learn whether this approach could help future patients.

About this study

In plain language

This study tests whether Kindred, an online program, helps African American families understand cancer risk passed down in families and genetic cancer testing. It is for Black or African American adults who have had cancer genetic testing and their blood relatives.

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.

Compensation is read from the study's own description and may be missing — always confirm with the study team.

Eligibility

Who can join

  • All participants must be age 18 or older, speak and read English, and have internet access.
  • The main family participant must identify as Black or African American. They may also identify with other races or ethnic groups.
  • The main participant must have been seen within the past year at the Breast and Ovarian Cancer Risk Evaluation Clinic or Cancer Genetics Clinic at the University of Michigan Rogel Cancer Center.
  • The main participant must have completed testing for cancer-related gene changes passed down in families, regardless of the results.
  • Eligible results include gene changes linked to hereditary breast and ovarian cancer or Lynch syndrome, which raise cancer risk. Negative results that leave questions and gene changes with unclear meaning also qualify.
  • If more than one blood relative has been evaluated or tested, the relative evaluated earliest is the main participant.
  • Other participants must be blood relatives of an enrolled main participant. They do not need to have had genetic testing.

Who can't join

  • Anyone under age 18, unable to speak or read English, or without internet access cannot join.
  • The main participant cannot join if they do not identify as Black or African American.
  • The main participant cannot join if they have not had a cancer risk evaluation or were evaluated more than one year ago.
  • A person cannot be the main participant if they were evaluated more recently than another relative.
  • The main participant cannot join if they have not had cancer genetic testing.
  • Other family participants cannot join if they are not blood relatives of the main participant.

Simplified for readability. The official criteria below are what the study team uses.

Official eligibility criteria

Inclusion Criteria: * 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 Exclusion Criteria: * 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

Study sites (1)

MI