Development of the Family Map: Examination of Communal Coping Across Disease Context

Study point of contact

Laura M. Koehly, Ph.D.
(301) 451-3999
[email protected]
Mindy J Perilla
(866) 585-7192
[email protected]


2 United States sites


> 18 Years

Study type






About the study


– 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.

participation requirements

– 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 or step) relative of the primary participant or
spouse/partner of the primary participant or biological relative of primary

participation restrictions

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).


  • Bethesda, Maryland, United States, National Human Genome Research Institute (NHGRI), 9000 Rockville Pike, 20892 [Recruiting]
  • Cincinnati, Ohio, United States, Cincinnati Children's Hospital Medical Center, 45229-3039 [Recruiting]