NCC Long-Term Follow-Up Project and the NBSTRN CC. November 17, 2009 Amy Hoffman, MPH Amy Brower, PhD Project Manager, NBSTRNProject Manager, NCC LTFU. Presentation Overview. Alphabet Soup American College of Medical Genetics (ACMG) Overview - PowerPoint PPT Presentation
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NBS LTFU Special SupplementAmy Brower, Project Manager
Newborn Screening Translational Research Network(NBSTRN)
Michael Watson, PIAmy Hoffman, Project Manager
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Relationship of 1-Year NBS LTFU Special Supplement to NCC (FY 2010)Relationship of 1-Year NBS LTFU Special Supplement to NCC (FY 2010)
Key Partner Organizations for all efforts include NNSGRC, AAP and APHL.
Cooperative Agreement: MCHB/HRSA
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What is the NCC/RC System?What is the NCC/RC System?
The NCC/RC System was established by HRSA/MCHB/GSB in 2004 to improve the health of children and their families by: 1) promoting the translation of genetic medicine into public
health and healthcare services, and 2) enhancing access to these services.
System components: 1 NCC 7 RCs
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RC Goals and ObjectivesRC Goals and Objectives
The primary goal of the RCs is to ensure 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.
This is accomplished by: Developing infrastructure and capacity Strengthening communication and collaboration among public
health, individuals, families, primary care providers, and genetic medicine and other subspecialty providers
Evaluating outcomes and using these data to enhance efforts
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RC StructureRC Structure
RCs have a regional coordinating center and stakeholders that include: Families Genetics service providers Primary care providers Public health
• Newborn screening programs and laboratories• Community Health Centers, Indian Health Service, etc.
States • Health departments• Emergency planning and response
Others, such as industry and professional organizations
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What Does the NCC Do?What Does the NCC Do?
The NCC facilitates local work of the RCs in building capacity to strengthen and support genetics and newborn screening (NBS) services in order to address the maldistribution of genetic services and resources.
Maximizing collaboration between the genetic services, primary care/Medical Home, NBS and public health communities is central to all NCC and RC activities.
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NCC Activities Include…NCC Activities Include…
NCC activities that strengthen genetic services and research include: Broad consumer participation and education
opportunities A dynamic national provider network and
searchable directory of services Telegenetics capacity-building NBS data collection and long-term follow-up
activities NBS emergency preparedness Development and dissemination of management
guidelines around NBS and transition of care
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NCC Focus on LTFUNCC Focus on LTFU
Special supplement to NCC focused on LTFU. Work Group chaired by Sue Berry.
ACHDNC defined the goal of LTFU as assuring the best possible outcome for individuals with disorders identified through newborn screening.*
Four components identified: Care coordination through a medical home Evidence-based treatment Continuous quality improvement New knowledge discovery *Kemper et al. Genet Med 2008:10(4):259-261.
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NCC LTFU and Health Information ExchangeNCC LTFU and Health Information Exchange
LTFU requires health information exchanges throughout the lifetime of newborn screening identified patients.*
LTFU information systems should utilize best practice approaches to information technology development.
LTFU information systems should connect stakeholders, processes and outcomes through the collection, integration, evaluation and sharing of key data and metrics.
*Hinman et al. Genet Med 2009:11(6):418-424.
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NCC LTFU Main Areas of Activity NCC LTFU Main Areas of Activity
Accelerate and concentrate LTFU efforts. Determine information systems needs of state
newborn screening programs to conduct LTFU of newborn screening identified patients.
Incorporate findings into a public health evaluation tool that can be used to monitor and improve LTFU.
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NBSTRN CCNBSTRN CC
Key Partner Organizations for all efforts include NNSGRC, AAP and APHL.
NBSTRN CCMichael Watson, PI
Amy Hoffman, Project Manager
Standing CommitteeHarvey Levy, Chair
Clinical CentersWorkgroup
LaboratoriesWorkgroup
Information TechnologyWorkgroup
BioethicsWorkgroup
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NBSTRN CC Key Features and ObjectivesNBSTRN CC Key Features and Objectives
NICHD initiative Development of national resources to support
research and development related to newborn screening
Long-term follow-up of NBS Developing evidence base for NBS candidate