Developing the Family Map: Looking at Communal Coping
|The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Know the risks and potential benefits of clinical studies and talk to your health care provider before participating. Read our disclaimer for details.|
|ClinicalTrials.gov Identifier: NCT01633021|
Recruitment Status : Recruiting
First Posted : July 4, 2012
Last Update Posted : December 8, 2022
- 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|
|Study Type :||Observational|
|Estimated Enrollment :||4000 participants|
|Official Title:||Development of the Family Map: Examination of Communal Coping Across Disease Context|
|Actual Study Start Date :||July 5, 2012|
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)
- 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.
- Cognitive network utility evaluation [ Time Frame: Varies by sub-study ]Evaluate the utility of cognitive network approaches to characterize the family social environment
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
|Contact: Julia R Nummelin||(301) firstname.lastname@example.org|
|Contact: Laura M. Koehly, Ph.D.||(301) email@example.com|
|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 firstname.lastname@example.org|
|United States, Pennsylvania|
|Geisinger Autism & Developmental Medicine Institute||Recruiting|
|Lewisburg, Pennsylvania, United States, 17837|
|Contact: Alexis Heidlebaugh, ScM, CGC 570-551-0559 email@example.com|
|Principal Investigator:||Laura M. Koehly, Ph.D.||National Human Genome Research Institute (NHGRI)|