The Mountain States Genetics Regional Collaborative (MSGRC) is one of seven regional collaboratives covering the nation. The MSGRC covers an 8 state region that includes Arizona, Colorado, Montana, Nevada, New Mexico,Texas, Utah and Wyoming. MSGRC is federally funded through Grant H46MC24095 from the U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA), Genetic Services Branch. The Texas Health Institute (THI) administers the MSGRC, which began a new five-year grant cycle on June 1, 2012. The MSGRC ensures that individuals with heritable disorders and their families have access to quality care and appropriate genetic expertise and information in the context of a medical home. The MSGRC facilitates regional collaboration, encourages involvement of diverse populations, and supports innovative mini-projects that inform quality improvement and systems change in the newborn screening and clinical genetics health care delivery systems. These collaborative efforts bring together clinical providers, public health professionals, and affected families to fulfill the MSGRC mission.
The MSGRC prides itself as being an open forum allowing all members – consumer advocates and genetic professionals - the opportunity to participate as equals in addressing relevant genetic services and issues.
The eight states in our region have a combined area over one million square miles,1 constituting a land area of almost one-third of the entire United States and extending from Canada to Mexico. The mountain states region has a population of more than 45 million people.2
Arizona, Colorado, Nevada, New Mexico, and Texas have larger concentrations of Hispanic/Latino populations than the US average3 , and the mountain states region is home to a higher percentage of Native Americans than the US as a whole.4 In the three states along the US-Mexico border, a language other than English is spoken at home in one quarter to one third of all households.5 As a result, the mountain states region will be challenged to deliver genetic services to unique populations of Americans, many of whom are culturally and linguistically distinct from the majority population.
While the eight states within the Mountain States region are diverse in terms of population composition, each of these states is among the top twenty fastest growing states in the US. Texas, Arizona, and Colorado are among the states with the largest net population increases from 1995 to 2025. Texas’s projected net population increase is over eight million, Arizona over two million, and Colorado nearly one and a half million. The net population increases for the remaining Mountain States include Montana with over 250,000, New Mexico with approximately 930,000, Nevada with approximately 800,000, Utah with over 930,000, and Wyoming with 214,000.6 Thus, based on rapid population growth alone, the Mountain States region will contribute an increasing proportion of individuals with genetic disorders in the US.
More than 700,000 births occur annually within the Mountain States region7 , and it is estimated that three to five percent of these births are complicated by a genetic or congenital condition. Consequently, as many as 21,000 infants and their families in the Mountain States region will require genetic services each year. In 2009, all states in the mountain state region except Montana had birth rates higher than the US birth rate of 13.5 per 1,000.8 In a geographically large region with centralized specialty services and a dispersed population, delivery of specialized services to the population constitutes a challenge. 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.
Initiated in 1984 as one of 10 regional networks covering the nation, the original Mountain States Genetics Network 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. In 2004, The Mountain States Genetics 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. The new Mountain States Genetics Regional Collaborative now includes the original states of Arizona, Colorado, Montana, New Mexico, Utah and Wyoming, plus the addition of Texas and Nevada. The Texas Health Institute administrates the grant and coordinates the MSGRC programs.
1 U.S. Census Bureau. (2012). Land and water area of states and other entities: 2008. Retrieved from http://www.census.gov/prod/2011pubs/12statab/geo.pdf.
2 U.S. Census Bureau. (2012). American Fact Finder. http://factfinder2.census.gov/faces/nav/jsf/pages/index.xhtml.
3U.S. Census Bureau. (2012). Resident population by Hispanic origin and state: 2010. Retrieved from: http://www.census.gov/prod/cen2010/briefs/c2010br-04.pdf.
4U.S. Census Bureau. (2012). Resident population by race and state: 2010. Retrieved from http://www.census.gov/prod/cen2010/briefs/c2010br-10.pdf.
5U.S. Census Bureau. (2012). State and county quick facts. Retrieved from http://quickfacts.census.gov/qfd/index.html.
6 United States Census Bureau, http://www.census.gov/prod/2/pop/p25/p25-1131.pdf.
7 Kaiser Family Foundation. (2012). Kaiser state health facts, birth data. http://www.statehealthfacts.org/index.jsp. Birth data are from 2009.
8 Kaiser State Health Facts, 2006. Number of births per 1,000 Population. http://statehealthfacts.org/comparemaptable.jsp?ind=35&cat=2&sub=11&yr=17&typ=3&sort=n&o=d