BFOR Digital Health solution/Web Portal: A digital health solution with Internet-based participant recruitment and ascertainment is a mechanism for distributing access to genetic testing to populations who might not otherwise have access. For this project, LifeLink will build a private web-portal designed by the PI's of the study as described in this protocol, including the wireframes that are in the appendices, that will enable secure contact between study participants and the participating commercial laboratory (Quest Diagnostics) and BFOR researchers, as well as facilitate contacts between study participants and their primary care providers and/or a list of BFOR study centers and BFOR providers.
Study summary
The purpose of this study is to learn how to provide BRCA gene testing to a larger number of people as well as to make testing part of a person's regular medical care.
Eligibility
Sex
ALL
Min age
25 Years
Max age
—
Healthy volunteers
Accepted
Inclusion Criteria:
* Self-reported age ≥ 25
* Self identify as having at least one of their four grandparents as Ashkenazi Jewish
* Has medical insurance
* Able to understand and read the English-language
* Zip code falls within the catchment areas of the phase of the study (e.g. New York City, Boston, Philadelphia, Los Angeles) accessible to a BFOR designated provider
Exclusion Criteria:
* Under age 25
* No Ashkenazi Jewish ancestry
* Does not have insurance
* Has previously had medical BRCA testing ordered by a health care provider
Primary outcome measure(s)
Proportion of individuals receiving a standardized program of pretest education who then proceed to genetic testing — Up to 1 year
Proportions of individuals who choose to receive the results through their primary care providers or through the study-provided expert staff — Up to 1 year
Psychosocial impact of genetic population screening utilizing a digital health solution — Up to 1 year Quality of life questionnaires measuring cancer-specific distress, perceived risk and BRCA 1/2 testing knowledge will be used.
Facilitators and barriers to engaging primary care providers (PCPs) in the BRCA1/2 results disclosure process — Up to 1 year Post-disclosure PCP survey will be used to assess facilitators and barriers in the disclosure process
Participant health updates in personal familial cancer diagnosis and genetic testing depending on method of results communication — Up to 1 year Written survey for health and diagnostic updates
Trial sites (5)
Facility
City
Region
Status
University of California, Los Angeles
Los Angeles
California
Dana Farber Cancer Institute
Boston
Massachusetts
Beth Israel Deaconess Medical Center
Boston
Massachusetts
Memorial Sloan - Kettering Cancer Center
New York
New York
University of Pennsylvania
Philadelphia
Pennsylvania
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This page summarises publicly available registry data for informational purposes — not medical advice. Eligibility is determined by each study team; patients should discuss participation with their clinician.
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