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Emory University
- Project Identifier Information
- Project Title: Emory University
- Project Number: U22MC03960
- Email address: dledbetter@genetics.emory.edu
- Budget
| 1. MCHB Grant Award Amount: (Line 1, Form 1) | $707,806 |
| 2. Unobligated Balance: (Line 2, Form 1) | $0 |
| 3. Matching Funds: (if applicable) (Line 3, Form 1) | $0 |
| 4. Other Project Funds: (Line 4, Form 1) | $0 |
| 5. Total Project Funds: (Line 5, Form 1) | $707,806 |
The MCHB Grant Award Amount may differ from the total budget amount
displayed on the Snapshots page due to grant actions that occurred
after this report was submitted. These grant actions would include
supplemental funding such as carryovers and extensions.
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- Type(s) of Service Provided
- Infrastructure Building Service
- Project Description on Experience to Date
- Project Description
- Problem:
Problems related to genetic services in Region 3 include maldistribution of genetic resources, financial inequities within and between states, increased number of designated Health Profession Shortage Areas and week linkages among health professionals, public health institutions, and medical homes.
- Goals and Objectives: List up to 5 major goals and time-framed objectives per goal for the project.
| Goal 1: | Identify existing gaps in genetic services in Region 3 affecting health and development of children and adults wi heritable disorders. |
| Objective 1: | Conduct regional needs assessments with participating state partners organized by the newborn screening program guidelines a) screening, b) follow-up, c) diagnosis, d) management, e) program evaluation, and f) informatics. |
| Objective 2: | Conduct regional needs assessment using focus groups and develop appropriate survey instruments to be completed by genetic specialists, public health professionals, other healthcare providers, and consumers. |
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| Goal 2: | Expand existing regional capabilities and resources, and develop new regional systems to address gaps identified in genetic services and maldistribution of genetic resources. |
| Objective 1: | Develop and implement a pilot project modeling strategies to reduce maldistribution of genetic resources at a regional level, with measurable outcomes and portability to other areas. |
| Objective 2: | Award competitive regional mini-grants to projects addressing an identified need or gap in genetic services and provide deliverable and measurable outcomes and portability to other areas. |
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| Goal 3: | Improve regional communication infrastructure to facilitate and information sharing among providers of genetic services and establish collaborative partnerships with other professional organizations. |
| Objective 1: | Develop, implement, and maintain a regional website expanding access to genetic information, services, and resources for health professionals and patient family populations. |
| Objective 2: | Develop, implement, and maintain a regional telecommunication infrastructure linking genetic specialty centers and provide a forum for project planning, sharing of expertise and mechanism for improving linkage to other primary and tertiary healthcare providers. |
| Objective 3: | To obtain continuing education credit from professional organizations. |
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- Activities/Methodology undertaken to meet project goals:
A regional needs assessment, including four focus groups and quantitative state assessment tools, were used to assess the regional services offered in screening, follow-up, diagnosis and management/evaluation. The overall sample of the focus groups consisted of 31 genetics services professionals, 25 from academic medical centers and 6 from the public health community. Participants were asked to take part in either the screening, follow-up, diagnosis or management/evaluation focus group according to their area of expertise in their state. All participants were also asked to complete an assessment tool to rank the genetics services programs offered in their state. State-of-the-art telecommunication nodes were also added to promote information sharing among genetics services professionals in Region 3. These nodes are now being used to conduct teleconferences to promote collaboration and increase educational opportunities. In addition, a survey has been conducted to determine continuing educational needs among registered dietitians involved in the heathcare managment of patients with inborn errors of metabolism (IEM).
- The first three Healthy People 2010 objectives which this project addresses are listed below.
- Related to Goal 1: Improve access to comprehensive, high-quality health care services (Objectives 1.1- 1.16).
- Coordination: List the State, local health agencies or other organizations involved project and their roles.
This effort strengthens relationships developed through SERGG with 8 states and 2 territories. Representatives in academic and public health have been identified, invited to participate in SERGG annual meetings. All were invited to participate in teleconference activities. This promoted collaboration among providers, ACMG and Federal representatives. Leaders collaborated with CDC to identify a continuing education model and to plan and develop activities and modules for metatolic dietitians.
- Evaluation : briefly describe the methods which will be used to determine whether process and outcome objectives are met.
The three logic models have been developed to describe different components of the project that define the goals associated with each activity, and monitor the activities and outputs to assure effectiveness and timeliness in achieving project goals. Logic models will be revised on a regular basis to reflect any changes in the project and to evaluate if process and outcome objectives are met. Data from different surveys will be analyzed and group discussions held through teleconferences.
- Continuing Grants ONLY
- Experience to Date :
Activities to date include conducting focus groups of Region 3 genetic services professionals, establishing regional contacts at the November SERGG meeting, creating awareness of needs in genetic services programs within the states and sharing those among genetic services professionals. In addition, we have polled genetic services professionals and asked them to rate the genetic programs and services currently available in their state and results are currently being assessed. Equipment and software has been chosen and established at five state centers within the region and telecommunication activities have begun to promote information sharing and educational opportunities among states within Region 3. In addition, planning has begun to develop a survey to assess the educational needs of registered dieticians focusing on Inborn Errors of Metabolism (IEM). A model has been identified to create continuing education opportunities for this group and is in the developmental phase. A website has been designed and activated and membership lists have been updated. Mass email opportunities to reach members across regions has been achieved.
- Website URL and annual number of hits:
URL: www.sergginc.org
Number of hits: 1653
- Key Words
- Children
- Children with special health care needs
- Continuing education
- Genetic services
- Needs assessment
- Newborn screening
- Newborns
- Telecommunications
- Title V programs
- Videoconferencing
- Annotation:
The purpose of this grant is to assess the maldistribution of genetic services in Region 3 and to develop regional collaborative linkages among health professionals and consumers by developing telecommunications infrastructure in an effort to improve understanding of scientific advancement and provide quality patient care in the field of genetics.
Are the Data Reported on this Form Provisional or Final?
Final
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