Supported by the DHHS/Health Resources and Services Administration/Maternal and Child Health Bureau/Genetic Services Branch.

            PROJECT ABSTRACT  

Project Title:                Heartland Genetics and Newborn Screening Collaborative
Applicant Name:          University of Oklahoma Health Sciences Center, Department of Pediatrics
Project Period:            October 1, 2004 – September 30, 2007

Problem

Access to modern clinical and laboratory genetic services is the problem of patients and families in AR, IA, KS, MO, ND, NE, OK, and SD, owing to the low number of geneticists and a maldistribution of them.  Problems of the region’s geneticists are the low level of external funding of medical genetics services and research, the slow pace at expanding newborn screening, and the lack of effective communication and networking in the region to address gaps in services and to facilitate quality genetic services.

 

Goals and Objectives

 The Heartland Genetics and Newborn Screening Collaborative will create a network of clinical, laboratory, and public health genetics services that will enhance existing services, including newborn screening, and increase the public’s access to, and address the maldistribution of, clinical and laboratory genetic services. The project’s objectives are: 1) establish Advisory Council of key stakeholders to prioritize and guide regional infrastructure, communication, and educational needs; 2) develop the Heartland Regional Genetics Plan by the end of Year 1; and 3) fund regional pilot projects that address identified regional priorities.

 

Methodology

 1) Establish a Steering Committee to nominate the Advisory Council and set the agenda for the first Advisory Council meeting; 2) conduct an Advisory Council meeting in February 2005, to prioritize the region’s services and educational needs; 3) develop the Heartland Regional Genetics Plan; 4) establish working groups to address the education and communication needs in the region; and 5) fund Pilot Projects that meet state and regional needs.

 

Coordination

Efforts will be coordinated through the Regional Center in Oklahoma and guided by the Advisory Council. The Regional Center will be the primary link between HRSA, the National Coordinating Center, and the regional Advisory Council. Inter-regional efforts will be facilitated by the National Center and by asking a representative from a neighboring region to attend Advisory Council meetings.

 

Evaluation

Quantitative and qualitative evaluation tools will be used to measure tangible products such as the Heartland Regional Genetics Plan, a directory, website, and meeting minutes; real progress versus work plan; description of the type and number of shared resources and collaborative relationships pre- and post-intervention; impact of pilot projects; and impact on access and education by comparing responses of key stakeholders and target populations pre- and post-intervention.

 

Annotation

 Improved access to quality clinical and laboratory genetics services requires a coordinated network of stakeholders; communication infrastructure; comprehensive strategic plan; and specific, measurable efforts that address limited resources, educational needs, and service delivery.