Developing the Family Map: Looking at Communal Coping

NCT01633021 | Completed

• 2 other identifiers: 99991214912-HG-N149
• Study Type: observational
• Target: 1,061
• Locations: 1 country
• Sites: 3

Brief Summary

Background: \- Knowing one s family medical history is a part of staying healthy. Some health risks run in families, and knowing these risks can promote more healthy behavior. Different social and cultural factors may affect how family members share this information. Genetic risk information that is shared in one family may not be shared in the same way in another. This information may also be shared differently between spouses, siblings, or parents and children. It may even be shared with more distant relatives. Knowing the information that family members share and how they share it may help researchers improve genetic disease treatment and support plans. Family surveys of people who have genetic health risks may help provide this information. Objectives: \- To study how family members affected by genetic-related diseases share health information with each other. Eligibility:

• Individuals at least 18 years of age who can read English or Spanish.
• Participants affected by a genetic disease or be related or married to someone who has the disease. Design:
• Participants will be screened with an initial questionnaire. They will identify their genetic disease and provide a basic health history.
• Participants who have the disease will complete an online survey or participate in a personal interview. The questions will take about 45 minutes to 1 hour to answer. The survey will ask about family health history and family support. Participants will also provide referrals to a spouse or relatives who will participate in the study.
• The spouse or relative will answer a similar survey. The survey will ask about health history and support for the spouse/relative with the disease.
• A gift card will be given as thanks for participating in the study.

Conditions

Cardiovascular Disease; Diabetes; Cancer; Genetic Screening; Sickle Cell

Keywords

Support; Cancer; Network; Diabetes; Sickle Cell Trait / Sickle Cell Disease; Natural History

Outcome Measures

Primary Outcomes (1)

• Social & relational factors from family network data

  Identify social and relational factors used to characterize family environment re communication of health information, encouragement of health behaviors, provision of support.

  Varies by sub-study

Secondary Outcomes (1)

• Cognitive network utility evaluation

  Varies by sub-study

Study Arms (3)

Diabetes

Self/Family member affected by type-2 diabetes (plus self-referred family-members)

Heritable Cancer Screen-Positive

Person who has screened-positive for heritable cancers on genetic tests (plus referred family-members)

Sickle Cell (Trait/Disease/Related)

Self/Family member affected by Sickle Cell Trait or Sickle Cell Disease (plus self-referred family-members)

Eligibility Criteria

• Age: 18 Years - 100 Years
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Recruitment is appropriate to the disease/screening-specific context, and may work with advocacy groups. Prospective participants who have / are at risk for chronic genetic disease (or are related to someone affected by condition) may be eligible to participate.@@@

You may qualify if:

• Aged 18 years or older
• Ability to complete in-person, web-based or telephone survey/interview(s)
• Ability to read English or Spanish (in some cases)
• Affected by or have at least one first- or second-degree relative affected by or have a spouse/partner affected by the disease(s) of interest OR Biological or non-biological (e.g. adopted, step, spouse, family through marriage) relative of the primary participant.

You may not qualify if:

• Individuals with cognitive difficulties will be excluded from the study, as participants will be required to comprehend and legally consent to participation in this study and complete the survey/interview(s).

Sponsors & Collaborators

• National Human Genome Research Institute (NHGRI): lead

Study Sites (3)

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

Bethesda, Maryland, 20892, United States

Location

Cincinnati Children's Hospital Medical Center

Cincinnati, Ohio, 45229-3039, United States

Location

Geisinger Autism & Developmental Medicine Institute

Lewisburg, Pennsylvania, 17837, United States

Location

Related Publications (4)

• Lewis MA, McBride CM, Pollak KI, Puleo E, Butterfield RM, Emmons KM. Understanding health behavior change among couples: an interdependence and communal coping approach. Soc Sci Med. 2006 Mar;62(6):1369-80. doi: 10.1016/j.socscimed.2005.08.006. Epub 2005 Sep 16.

  PMID: 16146666 BACKGROUND

• Stokols D. Establishing and maintaining healthy environments. Toward a social ecology of health promotion. Am Psychol. 1992 Jan;47(1):6-22. doi: 10.1037//0003-066x.47.1.6.

  PMID: 1539925 BACKGROUND

• Ersig AL, Williams JK, Hadley DW, Koehly LM. Communication, encouragement, and cancer screening in families with and without mutations for hereditary nonpolyposis colorectal cancer: a pilot study. Genet Med. 2009 Oct;11(10):728-34. doi: 10.1097/GIM.0b013e3181b3f42d.

  PMID: 19707152 BACKGROUND

• Desine S, Eskin L, Bonham VL, Koehly LM. Social support networks of adults with sickle cell disease. J Genet Couns. 2021 Oct;30(5):1418-1427. doi: 10.1002/jgc4.1410. Epub 2021 Apr 12.

  PMID: 33847032 DERIVED

MeSH Terms

Conditions

Diabetes Mellitus; Neoplasms; Cardiovascular Diseases; Sickle Cell Trait; Anemia, Sickle Cell

Condition Hierarchy (Ancestors)

Glucose Metabolism Disorders; Metabolic Diseases; Nutritional and Metabolic Diseases; Endocrine System Diseases; Anemia, Hemolytic, Congenital; Anemia, Hemolytic; Anemia; Hematologic Diseases; Hemic and Lymphatic Diseases; Hemoglobinopathies; Genetic Diseases, Inborn; Congenital, Hereditary, and Neonatal Diseases and Abnormalities

Study Officials

• Laura M Koehly, Ph.D.

  National Human Genome Research Institute (NHGRI)

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: FAMILY BASED
• Time Perspective: CROSS SECTIONAL
• Sponsor Type: NIH
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: June 29, 2012
• First Posted: July 4, 2012
• Study Start: July 5, 2012
• Last Updated: May 5, 2026

Record last verified: 2026-01-15

Locations

US (3)