The New York/Mid-Atlantic Region
Delaware, District of Columbia, Maryland, New Jersey, New York, Pennsylvania, Virginia and West Virginia.

Project Director:
Kenneth A. Pass, PhD,
New York State Department of Health

Project Co-Investigator:
Louis Bartoshesky, MD, MPH

Contact:
Katharine B. Harris, MBA, Project Director
New York State Department of Health
Wadsworth Center
Room E-299; P.O. Box 509
Albany, NY 12201-0509
(518)474-7148
kbh02@health.state.ny.us

Website: http://www.wadsworth.org/newborn/nymac/index.html

PROJECT ABSTRACT

Project Title:                New York/Mid-Atlantic Regional Genetics and Newborn Screening Collaborative

Applicant Name:          Health Research, Inc./New York State Department of Health

Project Period:            September 30, 2004 – September 29, 2007

 

Problem:

In Region 2, with 788,000 live births each year, about a thousand fifty children (0.14%) are diagnosed with one of up to 40 conditions in the screening panels. Given the lifelong nature of their illnesses, the cumulative burden of these conditions on the public health in the region is large. The New York Mid-Atlantic Region includes Delaware, District of Columbia, Maryland, New Jersey, New York, Pennsylvania, Virginia and West Virginia.

The goal of this project is to develop a regional approach toward the maldistribution of genetics resources in the region. The objectives are:

(1) Develop regional collaborative partnerships that include all parties interested in genetics.

(2) Develop and implement local solutions to barriers to access to specialty care by children with congenital conditions.

(3) Articulate a regional coordinating plan to address the maldistribution of genetic and newborn screening services and expertise across the region.

(4) Develop a regional and interregional back-up system for newborn screening in case of emergency.

(5) Standardize newborn screening panels in the region.

(6) Educate primary medical care providers, patients and their families, and medical insurers about the treatment of people with specific genetic conditions.

(7) Develop collaborative partnerships between primary medical care providers and genetic and/or specialty care providers to ensure continuity of medical care for children with special health care needs within a medical home.

 

Methodology

The objectives will be accomplished by bringing concerned public health professionals and medical experts together as members of an Advisory Council and work groups to discuss the issues and develop and implement solutions.

 

Coordination

The New York State Department of Health, Wadsworth Center will be the lead institution for this project. Health Research, Inc will provide administrative and financial oversight. An Executive Committee will be responsible for all activities of this project. An Advisory Council will be formed which will consist of representatives from each jurisdiction. The Council will be charged with identifying activities consistent with the objectives of this project and will identify members of work groups to pursue those activities. Work groups will have the responsibility for specific objectives. Members will represent each jurisdiction and will be selected for their expertise and interests to further the charge to each work group.

 

Evaluation

It is expected that challenges will be brought to the attention of the AC, the Executive Committee and members of the work groups. Details will be discussed, novel solutions will be explored, and implementation plans will be developed at the semi-annual AC meetings and at work group meetings. The project staff will work with the Executive Committee to address concerns of immediate importance and to implement AC plans.

 

Annotation

The goal of this project is to develop a regional approach toward the maldistribution of genetics resources in the region.  The objectives are: (1) Develop regional collaborative partnerships that include all parties interested in genetics. (2) Develop and implement local solutions to barriers to access to specialty care by children with congenital conditions. (3) Articulate a regional coordinating plan to address the maldistribution of genetic and newborn screening services and expertise across the region. (4) Develop a regional and interregional (with Region 1) back-up system for newborn screening in case of emergency shutdown. (5) Standardize, as appropriate and possible, newborn screening panels in the region. (6) Educate primary medical care providers, patients and their families, and medical insurers about the treatment of people with specific genetic conditions. (7) Develop collaborative partnerships between primary medical care providers and genetic and/or specialty care providers to ensure continuity of medical care for children within a medical home identified with disease by the newborn screening programs.