Inside HRSA - April 2008 - Health Resources and Services Administration
 
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Regional Collaboratives Work to Spread Genetics and Newborn Screening Expertise

Getting babies in the United States off to the best start possible, regardless of proximity to a health care provider, is a priority for HRSA and its Maternal and Child Health grantees.

That goal is behind HRSA’s funding of seven Genetic and Newborn Screening Service Regional Collaboratives, one of which HRSA Administrator Elizabeth Duke visited recently in Atlanta. The collaboratives use advanced telecommunications and telemedicine technology to provide education and training to geneticists and primary care providers with the aim of bringing clinical genetic services closer to underserved populations and rural communities.

Located in academic institutions, state public health departments, and non-profit organizations, the collaboratives work to strengthen the genetics and newborn screening capacity of the states in their region and to distribute genetic services and resources more uniformly across the nation.

A fundamental goal of the program is to expand access to genetic expertise, services and technology that providers and families need to diagnose and manage genetic disorders across an individual’s life span.

“The Collaborative helps ensure appropriate newborn screening and follow-up services — including linkages to a medical home — in cooperation with consumers,” said Dr. Rani H. Singh, principal investigator for the Region 3 collaborative, based in Atlanta. “Using trained experts, best practices models, and a uniform newborn screening system, we will improve the quality of health of children and their families.”

Atlanta’s Emory University hosted Duke’s Feb. 7 visit to the Region 3 collaborative, which serves eight states (Ala., Fla., Ga., La., Miss., N.C., S.C., and Tenn.) and two U.S. territories (Puerto Rico and the U.S. Virgin Islands). While there, Duke saw a demonstration of the collaborative’s telecommunications infrastructure. To emphasize the system’s capabilities, the demonstration and subsequent discussion were led by Dr. Hans Andersson, co-investigator for the Region 3 collaborative – from the comfort of his office in New Orleans.

As part of the HRSA grant, Tulane University’s Hayward Genetics Center in New Orleans set up the telecommunications system to link genetic centers that are partners in the collaborative. Representatives from each state in the region agreed to coordinate the program in their state and were trained to operate the system. Everyone was provided with a new computer loaded with special software, along with mini-cam equipment.

“In the wake of Hurricane Katrina, the need for emergency preparedness was critical and it was apparent that reliance on telephone and Internet connections would not be sufficient,” explained Andersson, who also is director of Tulane’s Hayward Genetics Center. “The only way to ensure families had the follow-up services they needed was to look to the future and develop a communications system that was easy to use and could be run from anywhere.”

The system allows split-screen, real-time video, and has the feel of a face-to-face meeting. Multiple telecommunication sites have been set up in all of the Region 3 states and territories.

Region 3 uses the system for grand rounds among genetic professionals across the region, during which new research findings or interesting case studies are discussed and clinical care is coordinated by teleconference when patients live in areas remote from their state genetic centers.

Through this type of communication, the Region 3 collaborative is improving genetic services across the Southeast. The collaborative hopes to develop broader regional telemedicine capability, with the goal of having telemedicine outreach clinics and inpatient consultations available everywhere across the region within four years.

“Within the regional collaborative system established by HRSA we have seen remarkable progress in expansion of state newborn screening panels, improved systems and quality assurance and, most importantly, increased communication within and between states in a very short period of time,” said Singh, who is also director of the Genetics Metabolic Nutrition Program at Emory. “This communication has opened the door to improvements and collaborations that will ultimately increase access to care for individuals with heritable disorders diagnosed today and in the future, allowing for improved health and health outcomes.”

Other key projects underway in Region 3 and the other collaboratives include:

  • Developing guidelines for delivering laboratory and patient care during disasters;

  • Improving and coordinating newborn screening laboratory performance throughout the region; and

  • Creating an information system to do follow-up on individuals with heritable disorders and link them with medical homes.
  

Did You Know....

In the United States, newborn screening tests babies within the first few days of life to look for serious, inherited, and treatable disorders. Blood is drawn from the newborn by heel prick and sent to a laboratory to screen for these disorders. If a newborn is found to have a disorder, action can be taken during the critical time before symptoms develop. With appropriate treatment, many can develop normally. Each state decides which diseases should be screened: more than 90 percent of states have laws to screen for at least 30 disorders; nine states screen for more than 50 disorders.

 

To Learn More:

...about the Regional Collaborative Program, visit the HRSA-funded National Coordinating Center for the Genetics and Newborn Screening Regional Collaborative Groups.
 

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