YEAR 2 GRANT AWARDS

University of Arizona: This project will provide targeted informational seminars aimed at helping Native American groups better understand the issues involved in genetic research, particularly as it affects these specific groups and provide public seminars on topical subjects to the lay public. The Mountain States Region is home to many tribal nations. There have been conflicts between some of these nations and genetic researchers in the past. This has created discomfort, at best, and antagonism, at worst. The University of Arizona application demonstrated that it has the knowledge and skill to implement the desired changes. This project is an admirable attempt to offer an olive branch and to enter into discussions to end these misunderstandings. All states in the region can benefit from the experience of this effort. This project was selected for the following outcomes: It attempts to improve access to underserved and geographically remote populations and is model for other states.

Selection Committee: Dr. John Johnson (Clinical), Dr. Gurbax Sekhon (Laboratory), Lynn Martinez (Public Health). These individuals were chosen for their expertise and knowledge of related activities in their sphere of influence. Joyce Hooker assisted as Project Manager of the Mountain States Genetics Regional Collaborative Center.

We received 23 applications from partners in Arizona, Colorado, Montana, Texas, and Utah. The applications were read and ranked by the selection committee using the application review form. The selection committee convened by phone and thoroughly discussed those applications with the highest rankings. It was essential that the projects have regional application, could be replicated elsewhere in the region or nationally or included other sites. After prudent consideration, the following 9 applications were selected for funding ranging from $2600 to $30,000.

Mile High Down Syndrome Association (MHDSA): The MHDSA was established in response to the concerns of parents that had not received information and support needed at the time of their child’s diagnosis nor did the child’s PCP have the knowledge, skills and resources needed to provide the level of care required. This project addresses the medical home for children with Down syndrome and the tracking of contacts. They will build partnerships with health care providers to improve the quality of service to families. This project was selected for the following outcomes: it will form public/private collaborative partnership, improve access to services especially the underserved and geographically remote, provide patient follow up and tracking, and a patient management model. ( download report)

University of Colorado Cancer Center: This project will provide educational outreach about genetic testing to individuals at-risk for hereditary colon cancer. This project will use the Bethesda Criteria for Hereditary Non-Polyposis Colon Cancer and the Colorado Central Cancer Registry (Colorado Department of Health). This project will determine how useful the registry data is and how it can best be used. This project was selected for the following outcomes: enables and improves access to services especially to the underserved and geographically remote, utilizes web-based resources, utilizes established registries, model for patient management. (download report)

University of Utah/Utah Department of Health: This project will develop a comprehensive plan for population-based outcome surveillance and longitudinally tracking of people identified through genetic screening programs in Utah and other Mountain States. This project was selected for the following outcomes: Development of patient tracking models and outcomes registries to support medical home initiatives and facilitate efficient patient management utilizing the state’s Birth Defects Network and Monitoring System. (download report)

The Children’s Hospital (Denver): Targeting cystic fibrosis heterozygotes, this project will provide a pilot study on delivering genetic services (a “virtual” genetic counseling system) to geographically remote communities using video conferencing and web-based technologies. This project was selected for the following outcomes: It provides a model for a group counseling approach, is easily replicable for other programs and disorders, and it is directed to underserved and geographically remote populations.

University of Colorado Sickle Cell Treatment and Research Center: This project addresses the recent emphasis on sickle cell trait counseling and will create a system which will reduce financial and access barriers to services and determine the actual community interest in sickle cell trait counseling in the Mountain States. Data from the newborn screening programs will be used. All states (via state health departments) in this region screen for sickle cell disease. This project was selected for the following outcomes: This project provides a model for a variety of genetic diseases and carrier states, it is directed at an underserved population and enhances the public health infrastructure and capacity for provision of genetic services. (download report)

Texas Tech University Health Sciences Center: Nurses are ideally positioned but often under educated to provide genetic information and appropriate referrals. This project seeks to build the capacity of the workforce to provide genetic services. This project was selected for the following outcomes: Improve access in the underserved and geographically remote, improve public health infrastructure for genetic services, is easily replicated and needed throughout the region and utilizes web resources. (download report)

The Children’s Hospital (Denver): This project will provide a revised neurodevelopmental review of long-term outcomes of Recombinant 8 syndrome. This syndrome occurs with greater frequency in children in the Mountain States region. This project was selected for the following outcomes: It will develop a patient management model for patients with this disorder, and patient tracking models and outcomes registries to support Medical Home initiatives, and facilitate efficient patient management for an underserved and geographically remote population. (download report)

Sickle Cell Treatment and Research Center: This project will look at the potential shift in the at-risk population (Latinos) for sickle cell trait and disease by tabulating selected data from the newborn screen form (Colorado Department of Health). Latinos are the fastest growing population in most of the states in this region. Knowing which populations are more at risk for this condition will aid in more focused outreach and education in these communities. This project was selected for the following outcomes: It focuses on underserved populations, enhance the public health infrastructure, and is easily replicated.(download report)