– 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.
|Julia R Nummelin|
|Laura M. Koehly, Ph.D.|
42 United States sites
> 18 Years
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).