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Prenatal Diagnosis
Public Health

The Mountain States Genetics
Regional Collaborative Center

Welcome | Overview | Purpose | Committees | Logic Model | Grants

Welcome

It is our pleasure to welcome you to The Mountain States Genetics Foundation (MSGF). We appreciate your interest in our organization and programs, and we look forward to a rewarding and productive association.

This information will provide you with an expanded understanding of the mission of MSGF, its history and current activities. As you become better acquainted with our programs, we encourage your comments and suggestions as we grow and improve our genetics education, collaboration and public information programs to better serve the Mountain States Region and beyond.

The Mountain States Genetics Foundation is a non-profit, 501 (c) (3) organization dedicated to providing education, information and networking opportunities for consumers and medical professionals in the Mountain States Region and beyond. The Foundation operates solely through donations and grant funding, providing education, networking and information services to the Mountain States region, including the states of Arizona, Colorado, Montana, New Mexico, Nevada, Texas, Utah and Wyoming,

The Foundation’s continuing mission is to be the primary independent voice advocating and supporting education, awareness and access to medical genetics information and services in our region. We pride ourselves on providing an open forum allowing all members – consumer advocates and genetic professionals - the opportunity to participate as equals in addressing relevant genetic services and issues. To that end, the Foundation each summer sponsors an annual education conference in Denver, Colorado in July.

History

The Mountain States Genetics Foundation was founded in 1993 by Robert McCurdy, M.D., to support the programs of the Mountain States Genetics Network (The Network). The Network was initiated in 1984 as one of 10 regional networks covering the nation, and originally was federally funded by the U.S. Department of Health and Human Services Health Resources and Services Administration (HRSA) Maternal and Child Health Bureau. Although Federal funding ended in 2001, the Network continued operations under the financial administration of the Mountain States Genetics Foundation.

From 2004 – 2007, The Foundation was awarded a HRSA grant designed to support a national coordinating center through the Mountain States Genetics Network for regional genetic services and newborn screening collaboratives, including support for increasing the screening capacity of newborn screening programs to improve early identification of infants with hyperbilirubinemia. Although administration of the HRSA grant is now provided by the Texas Health Institute, the Foundation continues to support its mission through private resources. The new Mountain States Region Genetics Collaborative Center separately operates focused genetics and newborn screening programs for members in the states of Arizona, Colorado, Montana, Nevada, New Mexico, Texas, Utah and Wyoming.

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Overview

The Mountain States Genetics Foundation provides information and education regarding genetic services to individuals throughout the Rocky Mountain West. It participants and direct audience are comprised of physicians, nurses, laboratory professionals, genetic counselors, public health workers, and consumer advocates from university medical schools, genetic laboratories, hospitals, state and local health departments, medical societies, genetic support groups and other organizations and individuals that have a vested interest in genetics.

The eight states in our region have a combined area of 1,081,813 square miles and a population of more than 38 million people. While there are major urban areas in our region, the overall population density is about 37 people per square mile, approximately one half of the average national population density per square mile. Among the culturally diverse groups who live in our region are Native Americans, Hispanic Americans, African Americans, and groups from Southeast Asia and Eastern Europe.

More than 600,000 births occur annually within our region, and 3 to 5 percent of these births are complicated by a genetic condition. Consequently, as many as 18,000 infants and their families in our region will require genetic services each year. The resources to serve these families are limited within each of our eight states. Coordination and collaboration among all people concerned with genetics services, lay and professional, help to maximize the use of relatively scarce resources.

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Purpose

The MSGF is committed to a number of related goals, including:

• Promote communication among genetic services providers
• Collaborate in the identification and sharing of genetics resources
• Solve problems by sharing solutions
• Coordinate services across state lines
• Explore and develop collaborative services and studies
• Improve the quality, quantity, and accessibility of genetics services within the region and beyond.

Our mission is accomplished by supporting the state public-health genetics programs, educating both lay and professional communities about the role genetics plays in human health, promoting standards and quality assurance programs, and sharing available education and training resources.

The work of the MSGF is carried focused in key areas of medical practice, including:

• Clinical Services
• Consumer Issues
• Education
• Laboratory Practice
• Newborn Screening
• Prenatal Diagnosis
• Public Health
• Advisory

The MSGF encourages participation, information exchange and discussion, based on his or her interest and expertise.

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Committees

The purpose and goals of the MSGF’s individual committees include:

• Clinical Services Committee
  Co-Chairs: Joanne Milisa Drautz (NM) JMilisa@salud.unm.edu; Marc S. Williams, M.D. (UT) marc.williams@intermountainmail.org.
  Purpose: To address clinical issues of the region; promote the establishment, practice, and delivery of quality clinical genetic services in the eight state region; and to establish and maintain a relationship with the American College of Medical Genetics and National Society of Genetic Counselors.

  Consumer Advocacy Committee
  Co-Chairs : Rod Slaght (CO) rods2002@msn.com; Joe Martinec (TX) martinec@mwvmlaw.com
  Purpose: To bring consumer perspectives to the regional collaborative centers activities, to facilitate consumer members’ work within the RCC, and to provide educational programs for consumers about genetics, new technologies, and legislative advocacy.

  Education Committee
  Chair: Mary Esther Carlin, M.D. (TX) mecarlin11@sbcglobal.net
  Vice Chair: Teressa Gehrke (CO) teressa@gehrke5280.us
  Purpose: To ascertain major information and educational needs of the public, schools, and health-care personnel regarding the nature of and necessity for genetics services, and to develop projects and materials to meet those needs.

  Laboratory Practices Committee
  Co-Chairs : Linda Sheppard, (AZ) lcsheppard@gainusa.com; Sheila Dobin, Ph.D. (TX) sdobin@swmail.sw.org
  Purpose: To gather information on genetic testing methodologies, educate health-care professionals on use of technologies and interpretation of results, initiate quality control discussions and establish regional quality-assurance programs to ensure accurate diagnostic, prognostic and treatment related information for both the physician and patient by credible laboratories that meets or exceeds established standards.

  Newborn Screening Committee
  Chair: Rebecca Anderson (UT) rebecca.anderson@hsc.utah.edu
  Purpose: To provide a format in our region for information exchange resulting in the coordination and quality assurance of bio-chemical genetics-screening laboratories and state-of-the-art follow up of newborns with congenital disorders detected through state and university newborn-screening programs and share expertise and resources between laboratory and follow-up of newborn screening in our region.

  Prenatal Diagnosis Committee
  Co-Chairs: Janice Rinsky (CO) Janice.rinsky@mostgene.org; Valerie Rappaport, M.D. (NM) vrappaport@salud.unm.edu
  Purpose: To disseminate information to consumers and health-care providers about the availability of prenatal testing in our region, and to monitor and improve the quality of testing for conditions such as Down syndrome and neural tube defects, other prenatal screening tests, high-resolution ultrasound, and antenatal genetics diagnostic testing.

  Public Health Issues Committee
  Chair: Lynn Martinez (UT) lynnmartinez@utah.gov
  Purpose: Improve the quality, accessibility, and use of genetic services by helping states to integrate genetic services into Title V and other public health programs, assess needs, and improve reimbursement models.

  Advisory Committee
  Chair: Lynn Martinez (UT) lynnmartinez@utah.gov
  Purpose: To carry out the overall planning, coordinating, monitoring, and evaluation of the MSGRCC and its activities. The members include the chairs of the other seven committees, a consumer-at-large, and two representatives from each state, one of whom represents public health.

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Logic Model

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Year 2 Selected Grants for Funding

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.

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.

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.

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.

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.

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.

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.

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.

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