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Developing the Family Map: Looking at Communal Coping

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ClinicalTrials.gov Identifier: NCT01633021
Recruitment Status : Recruiting
First Posted : July 4, 2012
Last Update Posted : December 8, 2022
Information provided by (Responsible Party):
National Institutes of Health Clinical Center (CC) ( National Human Genome Research Institute (NHGRI) )

Brief Summary:


- 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.


- To study how family members affected by genetic-related diseases share health information with each other.


  • 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.


  • 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.

Condition or disease
Sickle Cell Diabetes Cancer Cardiovascular Disease Genetic Screening

Detailed Description:
Facilitating the dissemination of disease risk information and promoting engagement in healthful behaviors within families may be enhanced by using network-based interventions. Network-based interventions are innovative in that they are tailored to the structure of the social system within which individuals are embedded. Understanding the social and relational factors associated with processes of family risk dissemination, family encouragement, and support is essential to developing network-based intervention tools targeting the family. The first objective of the current project is to ascertain those key social pathways that can be used in a family-centered network-based intervention that promotes disease prevention and health promotion in at-risk families. To this end, efforts will be focused on assessing whether there is a consistent, small set of relational characteristics associated with the dissemination of family risk information and processes of both behavioral and emotional adaptation to disease risk across various disease and cultural contexts. The second objective is to examine the feasibility of using cognitive network approaches to assess social interactions among family members as a means to enhance the implementation of a network-based intervention. A cognitive network is an individual's perception of the relationships among their family (or network) members. Thus, cognitive network approaches can potentially be used to capture an accurate representation of family social structure based on the information provided by a small subset of optimally situated family members. Those key social pathways identified within the first objective of this research will be used to address the second objective. Families affected by diseases and disorders that span the spectrum of genetic penetrance, ranging from highly penetrant, monogenetic disease to less penetrant, common complex conditions, will be recruited for the study. Further, the current effort will seek to engage samples from diverse cultural backgrounds to address our limited knowledge regarding risk communication and adaptation in such families and to facilitate generalization of results. Study participants will be recruited from established cohorts, outreach events, or ongoing studies, both at the NIH and at extramural institutions. Family members will be recruited using a snowball sampling approach and will be asked to complete an in-person, web-based and/or telephone survey/interview. Interviews will have a semi-structured format to allow for slight deviations in prompts and probes to address participant questions. The research addressed in this protocol will lead to the development of an innovative methodology with the potential to improve the design and implementation of family-based interventions that promote disease prevention.

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Study Type : Observational
Estimated Enrollment : 4000 participants
Observational Model: Family-Based
Time Perspective: Cross-Sectional
Official Title: Development of the Family Map: Examination of Communal Coping Across Disease Context
Actual Study Start Date : July 5, 2012

Resource links provided by the National Library of Medicine

MedlinePlus related topics: Family Issues

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)

Primary Outcome Measures :
  1. Social & relational factors from family network data [ Time Frame: Varies by sub-study ]
    Identify social and relational factors used to characterize family environment re communication of health information, encouragement of health behaviors, provision of support.

Secondary Outcome Measures :
  1. Cognitive network utility evaluation [ Time Frame: Varies by sub-study ]
    Evaluate the utility of cognitive network approaches to characterize the family social environment

Information from the National Library of Medicine

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided below. For general information, Learn About Clinical Studies.

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Ages Eligible for Study:   18 Years and older   (Adult, Older Adult)
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   No
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.@@@
  • 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.


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).

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT01633021

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Contact: Julia R Nummelin (301) 443-8185 julia.nummelin@nih.gov
Contact: Laura M. Koehly, Ph.D. (301) 451-3999 koehlyl@mail.nih.gov

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United States, Maryland
National Human Genome Research Institute (NHGRI), 9000 Rockville Pike Recruiting
Bethesda, Maryland, United States, 20892
Contact: Julia Nummelin, M.P.H.    301-443-8185    julia.nummelin@nih.gov   
United States, Pennsylvania
Geisinger Autism & Developmental Medicine Institute Recruiting
Lewisburg, Pennsylvania, United States, 17837
Contact: Alexis Heidlebaugh, ScM, CGC    570-551-0559    arheidlebaugh@geisinger.edu   
Sponsors and Collaborators
National Human Genome Research Institute (NHGRI)
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Principal Investigator: Laura M. Koehly, Ph.D. National Human Genome Research Institute (NHGRI)
Publications automatically indexed to this study by ClinicalTrials.gov Identifier (NCT Number):
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Responsible Party: National Human Genome Research Institute (NHGRI)
ClinicalTrials.gov Identifier: NCT01633021    
Other Study ID Numbers: 999912149
First Posted: July 4, 2012    Key Record Dates
Last Update Posted: December 8, 2022
Last Verified: September 2, 2022

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Studies a U.S. FDA-regulated Drug Product: No
Studies a U.S. FDA-regulated Device Product: No
Keywords provided by National Institutes of Health Clinical Center (CC) ( National Human Genome Research Institute (NHGRI) ):
Sickle Cell Trait / Sickle Cell Disease
Natural History
Additional relevant MeSH terms:
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Cardiovascular Diseases