Family Health History Education for Hereditary Diseases in the Black Community

(FHH Trial)

Overseen By Kent D Key, PhD

Age: 18+

Sex: Any

Trial Phase: Academic

Sponsor: Michigan State University

Disqualifiers: Non English speaking, non African American, others

No Placebo Group All trial participants will receive the active study treatment (no placebo)

Approved in 1 Jurisdiction This treatment is already approved in other countries

Compensation: Varies

Number of Visits: Unknown

100 Participants Needed

Trial Summary

Will I have to stop taking my current medications?

The trial information does not specify whether you need to stop taking your current medications.

What data supports the effectiveness of the treatment African American Family Health History Education Program?

Research shows that family health history tools can help African American communities recognize disease patterns and promote discussions about health, with 67% of participants using these tools to talk with family members. Additionally, initiatives like the Family Health History Initiative have successfully engaged over 225 African Americans in completing their family health histories, highlighting the potential of these programs to raise awareness and encourage preventive health actions. ^{1 2 3 4 5}

Is the Family Health History Education program safe for participants?

The Family Health History Education program has been implemented in various communities, including African American populations, without any reported safety concerns. It focuses on educating participants about their family health history to help prevent diseases, and there is no indication of harm from participating in such educational initiatives. ^{1 2 5 6 7}

How is the Family Health History Education Program unique compared to other treatments for hereditary diseases?

The Family Health History Education Program is unique because it is specifically designed for the African American community, focusing on educating individuals about their family health history to prevent hereditary diseases. It emphasizes culturally tailored education and community involvement, unlike standard treatments that may not consider cultural and social contexts. ^{1 2 7 8 9}

What is the purpose of this trial?

The understanding, utilization and uptake of Family Health History is essential to the prevention of health disparities in the African American community. Creating a culturally tailored Family Health History tool, co-developed by members of the African American community will inform, educate and empower African Americans about health issues related to their family genealogy. Applying the knowledge gained via Family Health Histories to increase preventative behaviors including screenings thus linking people to needed health services to prevent the onset of disease and illness.

Research Team

Kent D Key, PhD

Principal Investigator

Michigan State University

Eligibility Criteria

This trial is for English-speaking African American adults who are interested in learning about their family health history to prevent hereditary diseases and genetic disorders. It's not open to those under 18, non-English speakers, or individuals who do not identify as African American.

Inclusion Criteria

English speaking

Self Identify as African American

Exclusion Criteria

Non English speaking

Non African American

I am under 18 years old.

Timeline

Screening

Participants are screened for eligibility to participate in the trial

2-4 weeks

Intervention Development

Development of culturally appropriate Family Health History tools using a community-based participatory research approach

3 months

Implementation

Implementation of the African American Family Health History Education Program to increase utilization of Family Health History and preventative screening

6 months

Follow-up

Participants are monitored for the effectiveness of the intervention in increasing health literacy and communication

3 months

Treatment Details

Interventions

• African American Family Health History Education Program

Trial Overview The study is testing a culturally tailored education program designed with input from the African American community. The goal is to increase awareness and use of Family Health Histories for better prevention and linkage to health services.

Participant Groups

Group I: African American Family Health History Education Program Experimental Treatment 1 Intervention

The AAFHHEP arm is an intervention to increase utilization of FHH and increase preventative screening. This tool will be culturally tailored by African Americans for African Americans.

Group II: Genetic Alliance: Does it run in the family Active Control 1 Intervention

The Genetic Alliance Does it run in the family is an existing family health history tool kit generalized to all racial groups. This tool is widely available via the internet.

African American Family Health History Education Program is already approved in United States for the following indications:

Approved in United States as African American Family Health History Education Program for:

• Prevention of health disparities
• Diabetes
• Heart disease
• High blood pressure
• Stroke
• HIV
• STDs/STIs
• Cancer
• Cardiovascular disease

Who Is Running the Clinical Trial?

Michigan State University

Lead Sponsor

Trials

202

Recruited

687,000+

Findings from Research

A study involving 32 African American women revealed that while many participants recognized the importance of collecting family health history (FHH) information, most had only done so verbally rather than in writing.

Despite positive reactions to a biomedical FHH tool, only 32% of participants used it to document their FHH, indicating a need for more effective strategies to encourage written collection of FHH information for better communication with healthcare providers.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

"You don't have to keep everything on paper": African American women's use of family health history tools. Thompson, T., Seo, J., Griffith, J., et al.[2021]

The Family Health History (FHH) Initiative successfully engaged 225 African Americans in assessing their family health histories, highlighting the importance of genetic risk factors in disease prevention.

Over 60% of participants enrolled in the Minority Research Recruitment Database (MRRD), facilitating their access to research opportunities and promoting community involvement in health studies.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

The use of family health histories to address health disparities in an African American community. Vogel, KJ., Murthy, VS., Dudley, B., et al.[2022]

A study involving 30 community stakeholders in East Baltimore revealed that 43% believed families do not discuss family health history with their doctors, highlighting a gap in communication that could affect health outcomes.

Participants identified a strong need for increased awareness of family health history and genetics education, suggesting that community engagement is crucial for improving health promotion and prevention strategies related to genetic risks.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Family health history and genetic services-the East Baltimore community stakeholder interview project. Sanghavi, K., Moses, I., Moses, D., et al.[2020]

Only 37% of the 116,799 participants in the All of Us Research Program reported having 'a lot' of knowledge about their family health history, indicating a significant gap in awareness that could affect access to genetic services.

Individuals with 'some' or 'no' knowledge of their family health history were more likely to belong to underserved groups, including those with lower income, lower education levels, and non-White racial backgrounds, highlighting potential disparities in genetic screening access.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Self-rated family health history knowledge among All of Us program participants. Hull, LE., Natarajan, P.[2023]

The Connecticut Department of Public Health's initiative successfully disseminated training materials on family health history (FHH) across various community settings, targeting underserved populations who typically have lower rates of FHH collection and sharing.

The mixed methods evaluation of the program revealed effective strategies for promoting FHH education, emphasizing the importance of collaboration among local health departments, community health centers, and advocacy organizations to reach minority and immigrant communities.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Community-Based Family Health History Education: The Role of State Health Agencies in Engaging Medically Underserved Populations in Understanding Genomics and Risk of Chronic Disease. Senier, L., Shields, M., Lee, R., et al.[2023]

The standard Family Health History (FHH) tool is limited as it does not account for non-biological family members (NBFM), who play a crucial role in health and cultural transmission.

A new symbol was developed to include NBFM in the FHH process, addressing challenges faced by participants in collecting sensitive health data and enhancing disease management and prevention strategies.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Non-Biological (Fictive Kin and Othermothers): Embracing the Need for a Culturally Appropriate Pedigree Nomenclature in African-American Families. Spruill, IJ., Coleman, BL., Powell-Young, YM., et al.[2020]

A study involving 75 participants in Texas showed that educational sessions significantly improved knowledge and attitudes about family health history (FHH) and familial risks, indicating the effectiveness of diverse learning methods.

Despite increased knowledge and confidence, participants did not significantly change their practices in sharing FHH information with healthcare providers or family members, highlighting a gap in applying learned information.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Improving learning about familial risks using a multicomponent approach: the GRACE program. Arar, N., Delgado, E., Lee, S., et al.[2021]

A survey of 2276 college students revealed that nearly 54% were not interested in family health history (FHH) education, primarily due to low prioritization of the topic.

Among those interested, the top desired topics included interpreting FHH information and its application in disease prevention, with a preference for computer-based learning methods, highlighting a need for targeted educational strategies.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Are College Students Interested in Family Health History Education? A Large Needs Assessment Survey Study. Li, M., Kwok, OM., Ma, P., et al.[2023]

The community education workshops significantly improved genetics and health-related knowledge among 183 urban African American participants, with notable gains observed from pretest to posttest evaluations.

Participants showed a commitment to health behavior changes, particularly in collecting family health history, and more individuals reached the maintenance stage for health-related activities at the 2-month follow-up compared to before the workshops.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Evaluation findings from genetics and family health history community-based workshops for African Americans. Manswell Butty, JA., Richardson, F., Mouton, CP., et al.[2021]

References

1. Germany pubmed.ncbi.nlm.nih.gov

"You don't have to keep everything on paper": African American women's use of family health history tools. [2021]

2. United States pubmed.ncbi.nlm.nih.gov

The use of family health histories to address health disparities in an African American community. [2022]

3. Germany pubmed.ncbi.nlm.nih.gov

Family health history and genetic services-the East Baltimore community stakeholder interview project. [2020]

4. United States pubmed.ncbi.nlm.nih.gov

Self-rated family health history knowledge among All of Us program participants. [2023]

5. Switzerland pubmed.ncbi.nlm.nih.gov

Community-Based Family Health History Education: The Role of State Health Agencies in Engaging Medically Underserved Populations in Understanding Genomics and Risk of Chronic Disease. [2023]

6. United States pubmed.ncbi.nlm.nih.gov

Non-Biological (Fictive Kin and Othermothers): Embracing the Need for a Culturally Appropriate Pedigree Nomenclature in African-American Families. [2020]

7. England pubmed.ncbi.nlm.nih.gov

Improving learning about familial risks using a multicomponent approach: the GRACE program. [2021]

8. Switzerland pubmed.ncbi.nlm.nih.gov

Are College Students Interested in Family Health History Education? A Large Needs Assessment Survey Study. [2023]

9. Germany pubmed.ncbi.nlm.nih.gov

Evaluation findings from genetics and family health history community-based workshops for African Americans. [2021]