Deze pagina is automatisch vertaald en de nauwkeurigheid van de vertaling kan niet worden gegarandeerd. Raadpleeg de Engelse versie voor een brontekst.

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

30 november 2019 bijgewerkt door: National Human Genome Research Institute (NHGRI)

Family Communication of Hereditary Cancer Risk Among African Americans

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.

Studie Overzicht

Toestand

Beëindigd

Gedetailleerde beschrijving

The ways in which family members communicate with one another about hereditary cancer risk may have a significant impact on screening use and choices about predictive genetic testing. There have been many studies examining aspects of family communication of hereditary cancer risk but few have included a significant number of African American families. The lack of studies addressing how African American patients communicate about genetic risks for cancer with their relatives is a hindrance to facilitating communication strategies in this patient population. The proposed study is a mixed methods investigation aimed at understanding how communication of hereditary breast and ovarian cancer risk occurs in African American families. This study will seek to describe how African American women communicate with their family members about the information received during the genetic counseling process for BRCA1/2 genetic testing by analyzing data from two sources. The data collected from data source one of this study will be from female analogue clients who were recruited from the general population in Baltimore, Maryland to watch a videotape of a pre-test cancer genetic counseling session. The analogue clients were asked to imagine they were the patients in the visit and to respond to several open-ended questions about what they would tell their family members about what they learned from the session. A quantitative content analysis of the data from the open-ended responses will be conducted to identify the frequency of commonly stated words, phrases and concepts related to the respondents characterization of the content of their family communication. From data source one of this study, we will obtain information on what women report they would share with their family members and the words they report they would use. Data source two of this study will involve in-depth qualitative interviews with 40 African American women who have tested positive for a BRCA1/2 mutation. These interviews will seek to understand how test results and information from the genetic counseling process were actually shared with family members. These interviews will seek to not only further describe what information individuals reported sharing with their family members but also how the process of communication unfolded. From these two forms of data, this study will describe the family communication process of hereditary cancer risk among African American women.

Studietype

Observationeel

Inschrijving (Werkelijk)

8

Contacten en locaties

In dit gedeelte vindt u de contactgegevens van degenen die het onderzoek uitvoeren en informatie over waar dit onderzoek wordt uitgevoerd.

Studie Locaties

    • Maryland
      • Bethesda, Maryland, Verenigde Staten, 20892
        • National Human Genome Research Institute (NHGRI), 9000 Rockville Pike

Deelname Criteria

Onderzoekers zoeken naar mensen die aan een bepaalde beschrijving voldoen, de zogenaamde geschiktheidscriteria. Enkele voorbeelden van deze criteria zijn iemands algemene gezondheidstoestand of eerdere behandelingen.

Geschiktheidscriteria

Leeftijden die in aanmerking komen voor studie

18 jaar en ouder (Volwassen, Oudere volwassene)

Accepteert gezonde vrijwilligers

Ja

Geslachten die in aanmerking komen voor studie

Vrouw

Beschrijving

  • INCLUSION CRITERIA:

Understands and speaks English

African American

Women

18 years or older

Has had genetic testing for BRCA1/2 mutations

Studie plan

Dit gedeelte bevat details van het studieplan, inclusief hoe de studie is opgezet en wat de studie meet.

Hoe is de studie opgezet?

Ontwerpdetails

Medewerkers en onderzoekers

Hier vindt u mensen en organisaties die betrokken zijn bij dit onderzoek.

Publicaties en nuttige links

De persoon die verantwoordelijk is voor het invoeren van informatie over het onderzoek stelt deze publicaties vrijwillig ter beschikking. Dit kan gaan over alles wat met het onderzoek te maken heeft.

Studie record data

Deze datums volgen de voortgang van het onderzoeksdossier en de samenvatting van de ingediende resultaten bij ClinicalTrials.gov. Studieverslagen en gerapporteerde resultaten worden beoordeeld door de National Library of Medicine (NLM) om er zeker van te zijn dat ze voldoen aan specifieke kwaliteitscontrolenormen voordat ze op de openbare website worden geplaatst.

Bestudeer belangrijke data

Studie start

7 juni 2011

Studie voltooiing

7 januari 2016

Studieregistratiedata

Eerst ingediend

15 juni 2011

Eerst ingediend dat voldeed aan de QC-criteria

15 juni 2011

Eerst geplaatst (Schatting)

16 juni 2011

Updates van studierecords

Laatste update geplaatst (Werkelijk)

3 december 2019

Laatste update ingediend die voldeed aan QC-criteria

30 november 2019

Laatst geverifieerd

7 januari 2016

Meer informatie

Deze informatie is zonder wijzigingen rechtstreeks van de website clinicaltrials.gov gehaald. Als u verzoeken heeft om uw onderzoeksgegevens te wijzigen, te verwijderen of bij te werken, neem dan contact op met register@clinicaltrials.gov. Zodra er een wijziging wordt doorgevoerd op clinicaltrials.gov, wordt deze ook automatisch bijgewerkt op onze website .

Abonneren