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GSB/MCHB Technical Assistance Meeting for Newborn Screening & Genetics 
Infrastructure Grants

 

Double Tree Hotel
1750 Rockville Pike, Rockville, MD  20852
Telephone Message Number:  (301) 468-1100 
Fax Number: (301) 468-0308
 October 10-11, 2002

 

 

 Agenda

Goal:
Attendees will have a working knowledge, understanding and additional competency in the 
context of their work to enhance, expand and improve the infrastructure necessary to integrate State Newborn Screening & Genetic Programs with public and private health systems of care 
that coordinate services for newborns and children with or at risk for heritable disorders. 

Some material below is presented in PDF format.  If you are unable to open the files you can download a free copy of Acrobat Reader at the following link:  

Thursday, October 10, 2002
7:45-8:30 Continental Breakfast
8:30-8:35 Welcome
                 Michele Lloyd-Puryear
               Branch Chief
               Genetic Services Branch, MCHB
8:35-8:55 National Action Plan for Children and Youth with Special Health Care Needs and Their Families: 2010 Express
                 Merle McPherson (BIO)
               (Powerpoint Slide Presentation)
               Director
               Division of Children with Special Health Needs (DSCSHN), MCHB
8:55-9:15 Conceptual Overview
                 Deborah Linzer
               (Powerpoint Slide Presentation)
               Senior Public Health Analyst
               Genetic Services Branch, DSCSHN
9:15-10:15 State Presentations (Seven Minutes Each) Format for Presentation - PDF
  Dist. of Columbia
Hawaii 
Indiana
Iowa
Oklahoma 		State Abstract
State Abstract
State Abstract
State Abstract
State Abstract 		Presentation Flowchart 
Presentation Flowchart 
Presentation Flowchart 
Presentation Flowchart 
Presentation Flowchart 
10:15-10:45 Break (Informal Time for Networking)
10:45-Noon State Presentations (Seven Minutes Each)  Format for Presentation - PDF
  Massachusetts  
Michigan 
Missouri 
Rhode Island 
Utah 
Washington State 		State Abstract
State Abstract
State Abstract
State Abstract
State Abstract
State Abstract 		Presentation Flowchart 
Presentation Flowchart 
Presentation Flowchart 
Presentation Flowchart 
Presentation Flowchart 
Presentation Flowchart
Noon-1:15 Lunch
1:15-1:35 Integrating Genetic Services into Public Health-Guidance for State and Territorial Programs from the NNSGRC
                 Celia Kaye (BIO)
               (Powerpoint Slide Presentation)
               Vice Dean of the Medical School
               University of Texas Health Science Center at San Antonio
1:35-1:45 State of the States: Genetic Services and Newborn Screening
                 Brad Therrell (BIO)
               (Adobe Acrobat Presentation)
               Director
               National Newborn Screening and 
               Genetics Resource Center (NNSGRC)
1:45-2:05 ASTHO Toolbox
                 Laura Sternesky (BIO)
               (Powerpoint Slide Presentation)
               Policy Analyst, Genetics
               Association of State and Territorial Health Officials
2:05-2:25 Best Practices in the Integration of Newborn Metabolic Screening Programs with other Public Health Programs
                 David Ross (BIO)
               (Powerpoint Slide Presentation)
               Executive Director
               Center for Innovation in Health Information Systems
               The Task Force for Child Survival and Development

               Integration of Newborn Screening and Genetic Service Systems
               with Other Maternal Child Health Systems: A Sourcebook for 
               Planning and Development (Draft) - Link   
2:25-2:30 Summarize Information Presented and Lead into Discussion of Technical Assistance 
                 Alan Hinman (BIO)
               Principal Investigator
               All Kids Count
               The Task Force for Child Survival and Development                
2:30-3:00 Discussion of Technical Assistance with Whole Group
                 Attendees will be able to draw on information learned from the
               NNSGRC, ASTHO, and the Center for Innovation
               (Review Pre-Meeting Exercise - Discussion Questions) - Web link

               Alan Hinman (BIO)

               Resource: Celia Kaye, Brad Therrell, Marie Mann, 
                                Dave Ross, Laura Sternesky             
3:00-3:30 Break (Informal Time for Networking)
3:30-5:00 Genetics Pyramid Exercise 
                 Margaret McIntyre (BIO)
               Knowledge Manager
               Center for Innovation in Health Information Systems
               The Task Force for Child Survival and Development

               Resource: Celia Kaye, Brad Therrell, Marie Mann  

               Pyramid Exercise - (Powerpoint Slide Presentation)
5:00 Adjourn
                                          RECEPTION
6:00-8:00
 Reception
Sponsor: All Kids Count Program: A National Resource Center
Supported by The Robert Wood Johnson Foundation
Location: Gazebo in the Atrium

Friday, October 11, 2002
 
7:45-8:30 Continental Breakfast
8:30-8:45 Introduction to Round Tables
               Deborah Linzer
8:45-9:45 Round 1
                 
                A. Evaluation: Fundamentals
                    Kristin Saarlas (BIO)
                    Deputy Director
                    Center for Innovation in Health Information Systems
                    The Task Force for Child Survival and Development  
  
               B. Using Data Statistically
                   Nicole Fehrenbach (BIO)
                   Senior Research & Evaluation Associate
                   Center for Innovation in Health Information Systems
                   The Task Force for Child Survival and Development  
  
               C. Using Data Programmatically and Evaluatively
                   Karen Thiel Raykovich (BIO)
                   Senior Fellow
                   Office of Planning and Evaluation, HRSA

               D. Stakeholders: Professional/Providers
                   Tom Castonguay (BIO)
                   Public Health Analyst
                   Genetics Services Branch, DSCSHN

               E. Stakeholders: Community/Family
                   Panelpha  Kyler (BIO)
                   Public Health Analyst
                   Genetics Services Branch, DSCSHN
9:45-10:15 Break (Informal Time for Networking and to Change Groups)
10:15-11:15 Round 2
                  
               A.  Evaluation: Fundamentals
                    Kristin Saarlas (BIO)
                    Deputy Director
                    Center for Innovation in Health Information Systems
                    The Task Force for Child Survival and Development  
  
               B. Using Data Statistically
                   Nicole Fehrenbach (BIO)
                   Senior Research & Evaluation Associate
                   Center for Innovation in Health Information Systems
                   The Task Force for Child Survival and Development                    

               C. Using Data Programmatically and Evaluatively
                   Karen Thiel Raykovich (BIO)
                   Senior Fellow
                   Office of Planning and Evaluation, HRSA

               D. Stakeholders: Professional/Providers/Community/Family
                   Panelpha Kyler (BIO)
                   Public Health Analyst
                   Genetics Services Branch, DSCSHN

                   Tom Castonguay (BIO)
                   Public Health Analyst
                   Genetics Services Branch, DSCSHN
11:15-11:30 Break (Time to Regroup)
11:30-11:45 NNSGRC Experiences
                  Examples of Data Integration in Newborn Screening
                Brad Therrell (BIO)
                (Adobe Acrobat Presentation)
11:45-1:00 Lunch
                  A Pediatrician's Perspective
                Thomas F. Tonniges (BIO)
                (Powerpoint Slide Presentation)
                Director
                Department of Community Pediatrics
                American Academy of Pediatrics
1:00-2:15 Integrated Newborn Screening & Genetics Information Systems: Vision and Framework (20 min. presentation and 55 min. interactive discussion)
                  Alan Hinman (BIO)
                (Powerpoint Slide Presentation)

                Dave Ross (BIO)

                Ellen Wild (BIO)
                Director of Programs
                Center for Innovation in Health Information Systems
                The Task Force for Child Survival and Development

                This session will cover:        
  • current national initiatives on integrating public health information systems
  • the value of integrating these systems to create a Child Health Profile that would allow the medical home and other providers access, as necessary
  • the development of a framework for linking newborn screening programs with other childhood programs and their supporting information systems
2:15-2:30  Break
2:30-4:00 Next Steps
 
  • Introduction of Contract: Identification of Best Practices in the Integration of Newborn Metabolic Screening Programs with Other Public Health Programs: Phase II Newborn Screening Infrastructure Grants
    Deborah Linzer
  • FY 2003 Joint Guidance Initiative
    Deborah Linzer
    Next Steps (Powerpoint Slide Presentation)
         Application Guidance - PDF file
  • Future Meetings
  • Staying Connected
  • Where do we go from here?
    Alan Hinman (BIO)
                    Wrap Up 

               Michele Lloyd-Puryear
                
4:00 Adjourn

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