RECRUITING

Identifying and Caring for Individuals With Inherited Cancer Syndrome

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

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.

Official Title

Approaches to Identify and Care for Individuals With Inherited Cancer Syndromes

Quick Facts

Study Start:2020-03-09
Study Completion:2026-03-31
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT04494945

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:18 Years
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:Yes
Standard Ages:ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * ALL COHORTS: 18 years of age or older
  2. * Retrospective COHORT A: Per HIPAA waiver, Retrospective Cohort A will not actively consent
  3. * Retrospective COHORT A: Patients may or may not be diagnosed with cancer
  4. * Retrospective COHORT A: Patients have received genetic counseling in the past 5 years
  5. * Retrospective COHORT A: Patients have genetic variants that include BRCA1, BRCA2 and/or Lynch syndrome
  6. * COHORT A: Per Health Insurance Portability and Accountability Act (HIPAA) waiver, Cohort A returns survey as consent
  7. * COHORT A: Patients may or may not be diagnosed with cancer
  8. * COHORT A: Patients have received genetic counseling in the past 1 - 2 years
  9. * COHORT A: Patients have genetic variants that include BRCA1, BRCA2 and/or Lynch syndrome
  10. * COHORT A: INCLUSIVE of no contact list to exclude from Cohort B
  11. * COHORT B: Creation of secure Healthy Oregon Project (HOP) app account
  12. * COHORT B: Consent to this project, either hard or electronic signature
  13. * COHORT B: Consent to the HOP repository, either hard or electronic signature
  14. * COHORT B: Choosing to submit a deoxyribonucleic acid (DNA) sample
  15. * COHORT B: Patients diagnosed with any National Cancer Institute (NCI)-reportable cancers, including ductal carcinoma in situ (DCIS) and/or in situ breast cancer
  16. * COHORT B: Must have had an encounter within past twelve months
  17. * COHORT B: Exclude Cohort A
  18. * COHORT C: Creation of secure Hop app account
  19. * COHORT C: Consent to this project, either hard or electronic signature
  20. * COHORT C: Consent to the HOP repository, either hard or electronic signature
  21. * COHORT C: Choosing to submit a DNA sample
  1. Pregnancy or breastfeeding
  2. Severe psychiatric disorders
  3. Active substance abuse
  4. Unstable medical conditions
  5. Inability to comply with study requirements

Contacts and Locations

Principal Investigator

Jackilen Shannon, Ph.D.
PRINCIPAL_INVESTIGATOR
OHSU Knight Cancer Institute

Study Locations (Sites)

Providence Portland Medical Center
Portland, Oregon, 97213
United States
OHSU Knight Cancer Institute
Portland, Oregon, 97239
United States

Collaborators and Investigators

Sponsor: OHSU Knight Cancer Institute

  • Jackilen Shannon, Ph.D., PRINCIPAL_INVESTIGATOR, OHSU Knight Cancer Institute

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2020-03-09
Study Completion Date2026-03-31

Study Record Updates

Study Start Date2020-03-09
Study Completion Date2026-03-31

Terms related to this study

Additional Relevant MeSH Terms

  • BRCA1/2-Associated Hereditary Breast and Ovarian Cancer Syndrome
  • Breast Ductal Carcinoma In Situ
  • Hematopoietic and Lymphoid System Neoplasm
  • Hereditary Neoplastic Syndrome
  • Lynch Syndrome
  • Malignant Solid Neoplasm