Family HistoryNCT00359710
Patients' Perspectives on Identity, Ancestry and Genetics
An observational study of Family History, run by National Human Genome Research Institute (NHGRI) at 1 site in United States.
Trial summary
This study will collect the opinions, understandings and personal health care experiences of multiracial persons of African and European ancestry. Understanding multiracial patients' beliefs and experiences about their race, ethnicity, ancestral origin and the genetic components of diseases can provide important data… Read more about this study
- Who is it for?
- Ages 21 years and older
- Conditions the study is for
- Family History
- How many people
- 22 participants
- Where
- 1 siteUnited States
- Study dates
- 19 Apr 2006to 23 Feb 2011
- Phase
- Observational
- Are there results?
- None posted in the registry
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 21 years and older
- All sexes
- No healthy volunteers
- Adult, Older adult
Who may be able to join
None listed.
Who cannot join
- Individuals will be excluded from the study if they do not have at least one parent that self-identifies as Black or has African ancestry and another parent that self identifies as White or has European ancestry. Other exclusion criteria include: (1) under 21 years of age, (2) not had at least two clinical visits with a health care professional in the last year and (3) not more than one individual per family.
Trial locations and contacts
1 site in 1 country.
United States1 site
National Institutes of Health Clinical Center, 9000 Rockville Pike
Bethesda, Maryland, 20892
About this study
Official title: Identity, Ancestry and Genetics: Patients' Perspectives
This study will collect the opinions, understandings and personal health care experiences of multiracial persons of African and European ancestry. Understanding multiracial patients' beliefs and experiences about their race, ethnicity, ancestral origin and the genetic components of diseases can provide important data for developing ways to communicate how human genetic variation is related to self-identified race and ethnicity. The study will:
- Investigate multiracial individuals' beliefs about biological and genetic differences based on race and ethnicity;
- Collect stories of identity, ancestry and clinical experiences of multiracial individuals with one parent of African ancestry and one parent of European ancestry;
- Investigate multiracial patients' experiences regarding family health history and communication of genetic risk of disease.
Read more
Persons 21 years of age or older in the Atlanta, Georgia, or Washington, D.C., metropolitan areas who are from a multiracial background and have used health care services in the last 2 years may be eligible for this study. Participants are interviewed one-on-one for about 2 hours to gather information about their background, family ancestry, self-identity, race and ethnicity, health care interactions and genetics and health. Each participant completes a short questionnaire before and after the interview.
...
Read the detailed description
The complex relationships between self-identified race, ethnicity, ancestral origin and the genetic components of diseases demands a better understanding of patients' conceptions of these identifiers and how they impact their health. The lived experiences of multiracial individuals can provide valuable perspectives on questions of race and ethnicity, the collection of ancestral information in assessing health history and communication of racial or ethnic specific disease risk. Understanding patients' beliefs and experiences will provide important data for developing ways to communicate how human genetic variation is related to self identified race and ethnicity. We aim to conduct semi-structured in-depth interviews with adults at least 21 years of age who identify as having a multiracial background with African and European ancestry. The study will include participants from the Atlanta, Georgia and Washington, D.C. metropolitan areas. This preliminary study uses qualitative methods to capture the personal stories of identity, ancestry and clinical experiences from a population that has not been adequately researched.
- Conditions
- Family History
- Keywords
- Multiracial Populations, Human Genetic Variation, Family History, Admixture, Physician-Patient Communication, Ancestry, Self-Identified Multiracial Adults, Interview
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted2 Aug 2006 (estimated)
- Study start19 Apr 2006
- Study completion23 Feb 2011
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Publications (3)Papers the sponsor has linked to this study.
- Other trials for Family HistoryStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Enrolment
- 22 participants (actual)
Sponsor and investigators
- Lead sponsor
- National Human Genome Research Institute (NHGRI)
- Sponsor type
- US National Institutes of Health
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT00359710
- Sponsor's protocol ID
- 060148
- Other IDs
- 06-HG-0148
- Status last verified
- 23 Feb 2011
- First submitted
- 1 Aug 2006
- Last updated
- 2 Jul 2017
- Results posted
- No
Publications
Jorde LB, Wooding SP. Genetic variation, classification and 'race'. Nat Genet. 2004 Nov;36(11 Suppl):S28-33. doi: 10.1038/ng1435.
PubMed 15508000Collins FS. What we do and don't know about 'race', 'ethnicity', genetics and health at the dawn of the genome era. Nat Genet. 2004 Nov;36(11 Suppl):S13-5. doi: 10.1038/ng1436.
PubMed 15507997Bonham VL, Warshauer-Baker E, Collins FS. Race and ethnicity in the genome era: the complexity of the constructs. Am Psychol. 2005 Jan;60(1):9-15. doi: 10.1037/0003-066X.60.1.9.
PubMed 15641917
Study at a glance
From the registry record, last updated by the sponsor on 2 Jul 2017. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Identity, Ancestry and Genetics: Patients' Perspectives
- ClinicalTrials.gov ID
- NCT00359710
- Acronym / sponsor ID
- 060148
- Conditions
- Family History
- Keywords
- Multiracial Populations, Human Genetic Variation, Family History, Admixture, Physician-Patient Communication, Ancestry, Self-Identified Multiracial Adults, Interview
- Study type
- Observational
- Recruitment status
- Completed
- Enrolment
- 22 participants (actual)
- Lead sponsor
- National Human Genome Research Institute (NHGRI)US National Institutes of Health
- Study start
- 19 Apr 2006
- Study completion
- 23 Feb 2011
- First posted
- 2 Aug 2006 (estimated)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
This study will collect the opinions, understandings and personal health care experiences of multiracial persons of African and European ancestry. Understanding multiracial patients' beliefs and experiences about their race, ethnicity, ancestral origin and the genetic components of diseases can provide important data for developing ways to communicate how human genetic variation is related to self-identified race and ethnicity. The study will:
- Investigate multiracial individuals' beliefs about biological and genetic differences based on race and ethnicity;
- Collect stories of identity, ancestry and clinical experiences of multiracial individuals with one parent of African ancestry and one parent of European ancestry;
- Investigate multiracial patients' experiences regarding family health history and communication of genetic risk of disease.
Persons 21 years of age or older in the Atlanta, Georgia, or Washington, D.C., metropolitan areas who are from a multiracial background and have used health care services in the last 2 years may be eligible for this study. Participants are interviewed one-on-one for about 2 hours to gather information about their background, family ancestry, self-identity, race and ethnicity, health care interactions and genetics and health. Each participant completes a short questionnaire before and after the interview.
...
Detailed description
The complex relationships between self-identified race, ethnicity, ancestral origin and the genetic components of diseases demands a better understanding of patients' conceptions of these identifiers and how they impact their health. The lived experiences of multiracial individuals can provide valuable perspectives on questions of race and ethnicity, the collection of ancestral information in assessing health history and communication of racial or ethnic specific disease risk. Understanding patients' beliefs and experiences will provide important data for developing ways to communicate how human genetic variation is related to self identified race and ethnicity. We aim to conduct semi-structured in-depth interviews with adults at least 21 years of age who identify as having a multiracial background with African and European ancestry. The study will include participants from the Atlanta, Georgia and Washington, D.C. metropolitan areas. This preliminary study uses qualitative methods to capture the personal stories of identity, ancestry and clinical experiences from a population that has not been adequately researched.
Study design
Who may qualify
- Ages
- 21 years and older
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Adult, Older adult
Key inclusion criteria (0 listed)
Key exclusion criteria (1 listed)
- Individuals will be excluded from the study if they do not have at least one parent that self-identifies as Black or has African ancestry and another parent that self identifies as White or has European ancestry. Other exclusion criteria include: (1) under 21 years of age, (2) not had at least two clinical visits with a health care professional in the last year and (3) not more than one individual per family.
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Primary outcome
Not reported in the source record.
Results and safety
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 2 Jul 2017.
- Background: PubMed 15508000Jorde LB, Wooding SP. Genetic variation, classification and 'race'. Nat Genet. 2004 Nov;36(11 Suppl):S28-33. doi: 10.1038/ng1435.
- Background: PubMed 15507997Collins FS. What we do and don't know about 'race', 'ethnicity', genetics and health at the dawn of the genome era. Nat Genet. 2004 Nov;36(11 Suppl):S13-5. doi: 10.1038/ng1436.
- Background: PubMed 15641917Bonham VL, Warshauer-Baker E, Collins FS. Race and ethnicity in the genome era: the complexity of the constructs. Am Psychol. 2005 Jan;60(1):9-15. doi: 10.1037/0003-066X.60.1.9.
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part. This study is not recruiting at the moment.
The record lists no contact. Use the official record to reach the sponsor.
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Family History, run by National Human Genome Research Institute (NHGRI) at 1 site in United States.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 0 inclusion and 1 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: finished, as of the sponsor's last update on 2 Jul 2017. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in United States. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
How can a doctor refer a patient or contact the research team?
The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.
Where can I read the original study information?
On the ClinicalTrials.gov record for NCT00359710, which also lists 3 linked publications.
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 2 Jul 2017.