Our current work aims to understand the social mechanisms underlying the dissemination of family risk information and cooperative adaptation to shared risk. We examine these processes across several different disease contexts, representing highly penetrant, genetic disorders as well as more common, complex diseases that have genetic bases. We currently have five ongoing studies that fall within these aims. With respect to highly penetrant genetic disorders, we are investigating the dissemination of genetic risk information and adaptation to risk in women from families with known BRCA1/2 mutations (NCI Protocol #01-C-0009;PI: Jennifer Loud). This research uses the Colored Eco-genetic Relationship Map (CEGRM) to assess the communication and social support networks of study participants. Currently, 200 participants have been recruited into the study. CEGRM assessments and psychosocial measurements were obtained at baseline and at three annual follow-ups. We continue to code the annual follow-up CEGRMs for future analyses. Additionally, during this reporting period, we published one paper from this project examining the characteristics of and reasons that members block the flow of genetic risk information within the family system. We continue to consider how families communicate about, experience, and cope with inherited conditions. We have established an Umbrella Protocol that allows us to examine these processes in ongoing studies (NHGRI Protocol #12-HG-N149;PI: Laura Koehly). One such project examines these relational processes within families affected by and at risk of Type 2 Diabetes. This research is conducted in collaboration with Dr. Melanie Myers of Cincinnati Childrens Hospital Medical Center. We have successfully recruited and completed 6 quantitative and 4 qualitative interview assessments since beginning this effort. In 2010 we completed recruitment and assessment on Project RAMA. In this study, we are investigating the dissemination process for complex disease risk information based on family health history and the development of family level strategies to address this risk (NHGRI Protocol #07-HG-N140;PI: Laura Koehly). This research uses the CDCs Family Healthware to provide risk information based on participants family history and behavioral recommendations based on participants current health behaviors. We used Family Healthware to provide risk feedback to participants from Mexican American households in the Houston, TX area. We successfully recruited 497 participants for baseline assessments (162 households), 481 participants completed the 1-month follow-up assessment and 461 participants had completed the 6-month follow-up assessment. Recent efforts have focused on analyzing these data to identify how family history based risk feedback motivates family communications about common, complex diseases and the development of cooperative strategies, such as encouragement to screen, to address this risk. Within the current reporting period, we have published four manuscripts from this project and we currently have four manuscripts under review. Based on results from Project RAMA, we have begun to develop a family health history assessment tool. It is anticipated that this tool will be used by a family genomics health educator to disseminate family risk information to their first and second degree relatives and encourage risk reducing behaviors. Over the course of the reporting period, we have developed the Families SHARE workbook and conducted a formative evaluation of the tool with 85 mothers (NHGRI Protocol #12-HG-N023;PI: Laura Koehly). Fourteen of these mothers also participated in three focus groups discussing the packet and suggested improvements. We are currently finalizing the workbooks contents based on the suggestions of our study participants. The workbook is being used in a family-based family health history initiative funded by the Australian Research Council and co-sponsored by the Cancer Council of South Australia. Additionally, we anticipate using the workbook in a similar effort targeting an under-resourced community in Pittsburgh, PA. In January, 2012, we began to examine the caregiving as a family-level process within families affected by Alzheimers disease (AD;NHGRI Protocol #12-HG-N022;PI: Laura Koehly). Within this project we are examining whether caregivers perceived risk of developing AD in their lifetime influences their engagement in and psychological response to the caregiving process. To date we have successfully recruited and completed assessments on 73 family caregivers and 43 formal caregivers. Currently, we are processing obtained data for analysis and will focus efforts over the next year on disseminating results from this study.
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