New York

Geographic area included in surveillance project: Nine county region in western New York: Allegany, Cattaraugus, Chautauqua, Genesee, Erie, Monroe, Niagara, Orleans, Wyoming.

Number of births each year in surveillance area: Approximately 29,000.

Children included in surveillance project: Children born in 1995 or later.

Case definition: The standard FASSNet case definition for FAS.

Information sources: Birth certificates; hospital records; hospital discharge dataset; county-specific early intervention programs; developmental clinics; genetics clinics; an FAS Evaluation program; clinics for high-risk patients (such as clinics enrolling children with positive newborn toxicology screen for illicit drugs); statewide Birth Defects Registry; the National Birth Defects Prevention Study; and physicians specializing in pediatrics, family practice, and OB/GYN.

Information collected: The standard FASSNet set of variables.

Prevalence rates: For birth years 1995-1997, the FAS prevalence is 0.4 per 1,000 live births (reflects above geographic area only). 

Education and training activities for health-care and other providers: In our FASSNet surveillance area, health-care providers, case managers, educators, and other individuals can obtain more information about FAS either informally or formally. Dr. Luther Robinson, a dysmorphologist, is the principal provider of comprehensive genetic services throughout western New York. He is available to conduct provider medical in-services, including those at grand rounds. Sandi Gangell is the program coordinator for the Pregnancy Risk Network of Western NY. She also coordinates regional FAS support groups and participates in the Community Action Team on Maternal Addictions. Ms. Gangell responds to many requests to share her knowledge and train groups.

Communication and media activities: During the past 2 years, the FASSNet project has co-sponsored two conferences about FAS, one in western New York and a statewide conference in Albany.  These two conferences have raised awareness about FAS in New York State and have been valuable opportunities for individuals and professionals with different areas of expertise to come together and share discussion and ideas.

FASSNet staff are collaborating with several state and national agencies to increase FAS awareness within New York and nationwide. Western New York staff have teamed up with the National Institute of Alcoholism and Alcohol Abuse to pilot test educational materials directed at pediatric health-care providers. Central Office staff are working with the New York State Office of Alcoholism and Substance Abuse Services, the Center for the Disabled, and the Office of Children and Families to sponsor educational opportunities for professionals in the foster care, child protective, and substance abuse services.

Other FAS-related programs in New York:

Division of Genetics
Children’s Hospital of Buffalo
936 Delaware Avenue
Buffalo, NY 14209
(716) 878-7532

Division of Pediatric Genetics
University of Rochester School of Medicine
Department of Pediatrics, Box 777
601 Elmwood Avenue
Rochester, NY 14642
(716) 275-5857

Strong Center for Developmental Disabilities
University of Rochester Medical Center
601 Elmwood Avenue, Box 671
Rochester, NY 14642
(716) 275-2986

Fetal Alcohol Assessment and Treatment Program
St. Catherine’s Center for Children
130 Ontario Street
Albany, NY 12203
(716) 463-3730

Pregnancy Risk Network
124 Front Street
Binghamton NY 13905
(800) 724-2454

New York State Office of Alcoholism and Substance Abuse Services
1450 Western Avenue
Albany, NY 12203-3536
(518) 473-3460

GROWING UP HEALTHY Hotline  (800) 522-5006
A referral service for prenatal care, child health insurance, WIC, and other related services available to low-income families in New York State and sponsored by the New York State Department of Health.

FAS-related state legislation or statutes: New York State Sanitary Code (Part 22.3) requires mandatory reporting of certain congenital anomalies, including FAS, for epidemiologic surveillance.  Every physician and hospital in attendance on an individual diagnosed within 2 years of birth as having one or more of these congenital anomalies must file a supplementary report with the State Commissioner of Health within 10 days of diagnosis thereof.

Relation between FASSNet project and state birth defects surveillance system: The FASSNet project is a special program of the New York State Congenital Malformations Registry of the Department of Health.

Project website: http://www.health.state.ny.us/nysdoh/cmr/fas.htm

Project contacts:

Charlotte Druschel, MD, MPH
Medical Director
Congenital Malformations Registry
New York State Department of Health
547 River Street, Room 200
Troy, NY 12180-2216
Phone: (518) 402-7990
FAX: (518) 402-7769
E-mail: cmd05@health.state.ny.us

Deborah Fox, MPH
Project Coordinator
Congenital Malformations Registry
New York State Department of Health
547 River Street, Room 200
Troy, NY 12180-2216
Phone: (518) 402-7990
FAX: (518) 402-7769
E-mail: djf03@health.state.ny.us

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