Family Communication of Hereditary Breast and Ovarian Cancer Risk Among African Americans

NCT01374685 | Terminated

• 2 other identifiers: 99991118611-HG-N186
• Study Type: observational
• Target: 8
• Locations: 1 country
• Sites: 1

Brief Summary

Background: \- Certain genetic mutations are linked to higher rates of cancer. It is important for people with these mutations to tell their families about it. This is because others in the family may also be at greater risk for developing these cancers. They can also pass these genes to their own children. But not much is known about how African Americans tell their family members about the results of their genetic testing. The information from this study can be used to improve genetic counseling services. These services will then be more effective in early cancer detection and prevention in the African American community. Objectives: \- To learn more about how African Americans who have tested positive for BRCA1/2 mutations tell their families about their genetic risk. Eligibility: \- African American (or of African descent) women who recently received positive test results for BRCA1/2 mutations. Design:

• Participants will be screened with a basic medical history.
• They will be asked general questions about their personal and family history. These include questions on marital and health insurance status, education, and income.
• Those in the study will have a 45- to 60-minute phone interview. They will answer questions about how they told their family members about their genetic test results. They will also be asked what that experience was like.

Conditions

Ovarian Neoplasm; Cancer Genetics; Breast Cancer

Keywords

BRCA1; BRCA2; Breast Cancer; African American; Women

Eligibility Criteria

• Age: 18 Years+
• Sex: female
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)

You may qualify if:

• Understands and speaks English
• African American
• Women
• years or older
• Has had genetic testing for BRCA1/2 mutations

Sponsors & Collaborators

• National Human Genome Research Institute (NHGRI): lead

Study Sites (1)

National Human Genome Research Institute (NHGRI), 9000 Rockville Pike

Bethesda, Maryland, 20892, United States

Location

Related Publications (3)

• Antoniou A, Pharoah PD, Narod S, Risch HA, Eyfjord JE, Hopper JL, Loman N, Olsson H, Johannsson O, Borg A, Pasini B, Radice P, Manoukian S, Eccles DM, Tang N, Olah E, Anton-Culver H, Warner E, Lubinski J, Gronwald J, Gorski B, Tulinius H, Thorlacius S, Eerola H, Nevanlinna H, Syrjakoski K, Kallioniemi OP, Thompson D, Evans C, Peto J, Lalloo F, Evans DG, Easton DF. Average risks of breast and ovarian cancer associated with BRCA1 or BRCA2 mutations detected in case Series unselected for family history: a combined analysis of 22 studies. Am J Hum Genet. 2003 May;72(5):1117-30. doi: 10.1086/375033. Epub 2003 Apr 3.

  PMID: 12677558 BACKGROUND

• Armstrong K, Micco E, Carney A, Stopfer J, Putt M. Racial differences in the use of BRCA1/2 testing among women with a family history of breast or ovarian cancer. JAMA. 2005 Apr 13;293(14):1729-36. doi: 10.1001/jama.293.14.1729.

  PMID: 15827311 BACKGROUND

• Barnes J, Kroll L, Burke O, Lee J, Jones A, Stein A. Qualitative interview study of communication between parents and children about maternal breast cancer. BMJ. 2000 Aug 19-26;321(7259):479-82. doi: 10.1136/bmj.321.7259.479.

  PMID: 10948027 BACKGROUND

MeSH Terms

Conditions

Ovarian Neoplasms; Breast Neoplasms

Condition Hierarchy (Ancestors)

Endocrine Gland Neoplasms; Neoplasms by Site; Neoplasms; Ovarian Diseases; Adnexal Diseases; Genital Diseases, Female; Female Urogenital Diseases; Female Urogenital Diseases and Pregnancy Complications; Urogenital Diseases; Genital Neoplasms, Female; Urogenital Neoplasms; Genital Diseases; Endocrine System Diseases; Gonadal Disorders; Breast Diseases; Skin Diseases; Skin and Connective Tissue Diseases

Study Officials

• Barbara B Biesecker

  National Human Genome Research Institute (NHGRI)

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Time Perspective: OTHER
• Sponsor Type: NIH
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: June 15, 2011
• First Posted: June 16, 2011
• Study Start: June 7, 2011
• Study Completion: January 7, 2016
• Last Updated: December 3, 2019

Record last verified: 2016-01-07

Locations

US (1)