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Identifying and Caring for Individuals With Inherited Cancer Syndrome

Approaches to Identify and Care for Individuals With Inherited Cancer Syndromes

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

  • Procedures mentioned: Questionnaires

Only what the study's summary and detailed description on ClinicalTrials.gov say. Time periods may describe the whole study or a part of it — ask the study team what applies to you.

Show the study's own words
  • "Patients also complete a survey about cancer prevention, screening, and treatment."
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 looks at ways to find and care for people with cancer risks passed down in families. It offers free gene testing to the general public, ages 18 and older. Researchers want to learn the value of broad testing instead of testing only people with known high-risk families.

This trial examines approaches to identify and care for individuals with inherited cancer syndrome. The purpose of this study is to offer no cost genetic testing to the general public. Researchers hope to learn the value of providing broad, public-wide testing for high risk cancer types (like hereditary breast and ovarian cancer or Lynch syndromes) instead of only testing people whose families are known to be high risk.

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

Eligibility

Who can join

  • All groups: You must be 18 or older. Other rules depend on your study group.
  • Past-records Group A: You had genetic counseling in the past 5 years and have gene changes linked to BRCA1, BRCA2, or Lynch syndrome. These can raise cancer risk. You may or may not have cancer.
  • Past-records Group A: You do not need to actively give consent because the study has a privacy-rule waiver.
  • Group A: You had genetic counseling in the past 1–2 years and have gene changes linked to BRCA1, BRCA2, or Lynch syndrome. You may or may not have cancer. Returning the survey means you agree to join.
  • Group A includes people on a no-contact list who are kept out of Group B.
  • Groups B and C: Create a secure Healthy Oregon Project (HOP) app account. Sign consent forms for this study and the HOP research collection, and choose to give a DNA sample. DNA carries your genes.
  • Group B: You must have a cancer diagnosis that meets National Cancer Institute reporting rules. This includes breast cancer that has not spread beyond where it started, such as DCIS.
  • Group B: You must have had a health care visit in the past 12 months and cannot be in Group A.

Who can't join

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

    Official eligibility criteria

    Inclusion Criteria: * ALL COHORTS: 18 years of age or older * Retrospective COHORT A: Per HIPAA waiver, Retrospective Cohort A will not actively consent * Retrospective COHORT A: Patients may or may not be diagnosed with cancer * Retrospective COHORT A: Patients have received genetic counseling in the past 5 years * Retrospective COHORT A: Patients have genetic variants that include BRCA1, BRCA2 and/or Lynch syndrome * COHORT A: Per Health Insurance Portability and Accountability Act (HIPAA) waiver, Cohort A returns survey as consent * COHORT A: Patients may or may not be diagnosed with cancer * COHORT A: Patients have received genetic counseling in the past 1 - 2 years * COHORT A: Patients have genetic variants that include BRCA1, BRCA2 and/or Lynch syndrome * COHORT A: INCLUSIVE of no contact list to exclude from Cohort B * COHORT B: Creation of secure Healthy Oregon Project (HOP) app account * COHORT B: Consent to this project, either hard or electronic signature * COHORT B: Consent to the HOP repository, either hard or electronic signature * COHORT B: Choosing to submit a deoxyribonucleic acid (DNA) sample * COHORT B: Patients diagnosed with any National Cancer Institute (NCI)-reportable cancers, including ductal carcinoma in situ (DCIS) and/or in situ breast cancer * COHORT B: Must have had an encounter within past twelve months * COHORT B: Exclude Cohort A * COHORT C: Creation of secure Hop app account * COHORT C: Consent to this project, either hard or electronic signature * COHORT C: Consent to the HOP repository, either hard or electronic signature * COHORT C: Choosing to submit a DNA sample

    Study sites (2)

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