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Loss of funding and slow enrollment
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| Name | Class |
|---|---|
| The Foundation for Barnes-Jewish Hospital | OTHER |
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The purpose of this research study is to learn how cancer care providers can help their patients communicate the need for genetic testing in families with inherited cancer syndromes.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Usual Care | No Intervention |
| |
| FACT Toolkit (FACTT) | Experimental |
|
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Families Accelerating Cascade Testing Toolkit | Other | -Online family history assessment, video of Siteman Cancer Center genetic counselors, physicians and patients highlighting the importance of cascade genetic testing, reviewing and receiving a family letter and gene information sheet, reviewing websites/online resources, and offering a family visit with a genetic counselor |
| Measure | Description | Time Frame |
|---|---|---|
| Proband-reported cascade testing rates of first-degree relatives | -For each proband, this testing rate is defined as the number of first-degree relatives tested divided by the number of living first-degree relatives age-appropriate for testing, as determined by family surveys done by the proband. The investigators will calculate mean cascade genetic testing rates for both conditions (Usual Care and FACTT intervention). | From start of study through completion of 6 month follow-up (estimated to be 18 months) |
| Number of primary barriers to genetic testing for first-degree relatives | -The Cascade Genetic Testing survey will assess knowledge, perception, and personal experience with sharing germline mutation information with first-degree relatives | From start of study through completion of 6 month follow-up (estimated to be 18 months) |
| Family member-reported cascade testing rates | -This testing rate is defined by the number of family members tested divided by the number of living family members age-appropriate for testing | From start of study through completion of 6 month follow-up (estimated to be 18 months) |
| Number of primary barriers to genetic testing for family members | -The Family Member survey will assess experience with considering testing themselves, decisional regret regarding genetic testing, and if they have tested positive | From start of study through completion of 6 month follow-up (estimated to be 18 months) |
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Inclusion Criteria:
Exclusion Criteria:
-"Variant of undetermined significance," "likely benign" or "benign" variant per ACMGG criteria
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| Name | Affiliation | Role |
|---|---|---|
| Andrea Hagemann, M.D., MSCI | Washington University School of Medicine | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Washington University School of Medicine | St Louis | Missouri | 63110 | United States |
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| Label | URL |
|---|---|
| Alvin J. Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine | View source |
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|
|
| ID | Term |
|---|---|
| D061325 | Hereditary Breast and Ovarian Cancer Syndrome |
| D003123 | Colorectal Neoplasms, Hereditary Nonpolyposis |
| ID | Term |
|---|---|
| D001943 | Breast Neoplasms |
| D009371 | Neoplasms by Site |
| D009369 | Neoplasms |
| D010051 | Ovarian Neoplasms |
| D004701 | Endocrine Gland Neoplasms |
| D009386 | Neoplastic Syndromes, Hereditary |
| D010049 | Ovarian Diseases |
| D000291 | Adnexal Diseases |
| D005831 | Genital Diseases, Female |
| D052776 | Female Urogenital Diseases |
| D005261 | Female Urogenital Diseases and Pregnancy Complications |
| D000091642 | Urogenital Diseases |
| D005833 | Genital Neoplasms, Female |
| D014565 | Urogenital Neoplasms |
| D000091662 | Genital Diseases |
| D030342 | Genetic Diseases, Inborn |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
| D001941 | Breast Diseases |
| D012871 | Skin Diseases |
| D017437 | Skin and Connective Tissue Diseases |
| D004700 | Endocrine System Diseases |
| D006058 | Gonadal Disorders |
| D015179 | Colorectal Neoplasms |
| D007414 | Intestinal Neoplasms |
| D005770 | Gastrointestinal Neoplasms |
| D004067 | Digestive System Neoplasms |
| D004066 | Digestive System Diseases |
| D005767 | Gastrointestinal Diseases |
| D003108 | Colonic Diseases |
| D007410 | Intestinal Diseases |
| D049914 | DNA Repair-Deficiency Disorders |
| D008659 | Metabolic Diseases |
| D009750 | Nutritional and Metabolic Diseases |
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