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NCC Long-Term Follow-Up Project and the NBSTRN CC. November 17, 2009 Amy Hoffman, MPH Amy Brower, PhD Project Manager, NBSTRN Project Manager, NCC LTFU. Presentation Overview. Alphabet Soup American College of Medical Genetics (ACMG) Overview

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Ncc long term follow up project and the nbstrn cc

NCC Long-Term Follow-Up Project and the NBSTRN CC

November 17, 2009

Amy Hoffman, MPH Amy Brower, PhD

Project Manager, NBSTRN Project Manager, NCC LTFU


Presentation overview
Presentation Overview

Alphabet Soup

American College of Medical Genetics (ACMG) Overview

National Coordinating Center (NCC) Long-Term Follow-up (LTFU)

Newborn Screening Translational Research Network (NBSTRN) Coordinating Center (CC)

Joint Activities


Alphabet Soup

  • ACMG = American College of Medical Genetics

  • NCC = National Coordinating Center for the Newborn Screening and Genetic Services Collaboratives

  • GSB/MCHB/HRSA = Genetic Services Branch, Maternal and Child Health Bureau, Health Resources and Services Administration

  • RC = Regional Genetic Service and Newborn Screening Collaborative

  • NICHD = Eunice Kennedy Shriver National Institute of Child Health and Human Development

  • NBSTRN = Newborn Screening Translational Research Network

  • NBSTRN CC = Newborn Screening Translational Research Network Coordinating Center

  • ACHDNC = Advisory Committee on Heritable Disorders in Newborns and Children


Acmg who s who
ACMG Who’s Who

NCC is a cooperative agreement between GSB/MCHB/HRSA and ACMG

NBSTRN CC is a contract between NICHD and ACMG

American College of Medical Genetics

(ACMG)

Michael Watson, Executive Director

Newborn Screening Translational Research Network

(NBSTRN)

Michael Watson, PI

Amy Hoffman, Project Manager

National Coordinating Center for the

Newborn Screening and Genetic

Services Collaboratives (NCC)

Michael Watson, PI

Judith Benkendorf, Project Director

Alisha Keehn, Project Manager

NBS LTFU Special Supplement

Amy Brower, Project Manager

Barry Thompson, Medical Director

Lori Oxendine, Publications Manager

Kathy Beal, Media Relations

Claudia McNatt, Meeting Manager

Irina Smotrich, Administrative Assistant


Relationship of 1 year nbs ltfu special supplement to ncc fy 2010
Relationship of 1-Year NBS LTFU Special Supplement to NCC (FY 2010)

Cooperative Agreement: MCHB/HRSA

Key Partner Organizations for all efforts include NNSGRC, AAP and APHL.


What is the ncc rc system
What is the NCC/RC System? (FY 2010)

  • 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

6


Rc goals and objectives
RC Goals and Objectives (FY 2010)

  • 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

7


Rc structure
RC Structure (FY 2010)

  • 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

8


What does the ncc do
What Does the NCC Do? (FY 2010)

  • 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.

9


Ncc activities include
NCC Activities Include… (FY 2010)

  • 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

10


Ncc focus on ltfu
NCC Focus on LTFU (FY 2010)

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.


Ncc ltfu and health information exchange
NCC LTFU and Health Information Exchange (FY 2010)

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.


Ncc ltfu main areas of activity
NCC LTFU Main Areas of Activity (FY 2010)

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.


Nbstrn cc
NBSTRN CC (FY 2010)

NBSTRN CC

Michael Watson, PI

Amy Hoffman, Project Manager

Standing Committee

Harvey Levy, Chair

Clinical Centers

Workgroup

Bioethics

Workgroup

Information

Technology

Workgroup

Laboratories

Workgroup

Key Partner Organizations for all efforts include NNSGRC, AAP and APHL.


Nbstrn cc key features and objectives
NBSTRN CC Key Features and Objectives (FY 2010)

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 conditions

Newborn screening laboratory network

Clinical centers network

Infrastructure development (informatics based)


Nbstrn
NBSTRN (FY 2010)

center

C

IT Infrastructure/

Website

Center

B

Facilitate Research on Treatments and LTFU

Center

D

Center

A

Center

E

Clinical Centers

Network

Standing Committee

NBSTRN CC

Coordinating all activities

and resources

Labs WG

CC WG

ELSI WG

IT WG

Provide Expertise & Support

LTFU Data

State

C

State

B

State

D

Dissemination of

Research Findings

Biospecimen

Repository

State

A

State

E

State NBS Programs

Network

RESEARCHERS


Nbstrn cc three main areas of activity
NBSTRN CC Three Main Areas of Activity (FY 2010)

Resource Identification

Education and Information Sharing

Technical

Assistance


Nbstrn cc resource identification
NBSTRN CC Resource Identification (FY 2010)

  • Clinical Centers Networks

    • Disease registries, diagnosis, and long-term follow-up data

    • Biospecimen repositories

    • Funding opportunities

  • State Newborn Screening Laboratory/Program Networks

    • Dried blood spot repository (goal 5+ million)

    • NBS laboratory network for pilot studies

  • Informatics and Information Technology

    • IT infrastructure

      • Converting NCIs cancer biomedical informatics grid (caBIG) as appropriate or developing compatible tools

      • Developing tools to link specimen repositories with registries and long-term follow-up clinical information


Nbstrn cc technical assistance
NBSTRN CC Technical Assistance (FY 2010)

  • Disease specific data sets (i.e. protocols for diagnosis and follow-up) development and review

    • Associated disease-specific standardized languages for laboratory and clinical parameters

  • Laboratory standards

  • State newborn screening program policies, procedures and capacities

  • Bioethics review

  • Study design and statistical consulting

  • State and local IRB policies, procedures and alignment


Nbstrn cc education and information sharing
NBSTRN CC Education and Information Sharing (FY 2010)

Public relations

Publications and meetings

Future trends and guidance


Nbstrn cc current projects
NBSTRN CC Current Projects (FY 2010)

During Year 1:

Established Standing Committee & Workgroups

Defined uniform data set for LTFU w/ NCC LTFU workgroup (formerly Data Collection)

80% uniform to all NBS conditions

20% disease specific

Collected NBS laboratory information

Initiated website development

Considered IT Infrastructure options and designs


Nbstrn cc future activities
NBSTRN CC Future Activities (FY 2010)

Develop collaboration with APHL

Characterize NBS labs

Capacity

Technical capability

Policies

Identify NBS lab network participants and needs

Develop biospecimen repository partners

Establish clinical networks as needed

Classify LTFU criteria

Standardize language


Joint ncc ltfu and nbstrn cc activities
Joint NCC LTFU and NBSTRN CC Activities (FY 2010)

Establish initial clinical histories of disorders identified in NBS for use in public health and research initiatives.

Initial focus on metabolic diseases utilizing several LTFU data collection efforts as a baseline.

Expand focus to endocrinopathies, hemoglobinopathies, cystic fibrosis, hearing loss and other NBS identified disorders.

Communicate findings to groups developing health care information technologies standards for consideration.

Coordinate activities with GSB/MCHB/HRSA, CDC and NICHD.


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