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New York – RuSH
Statewide Surveillance System for Hemoglobinopathies

RUSH

Welcome Message

New York State is one of seven states participating in a project called RuSH, which means Registry and Surveillance System for Hemoglobinopathies. The project is funded by the Centers for Disease Control and Prevention (CDC) and the National Heart, Lung, and Blood Institute (NHLBI).

The objective of this project is to establish a statewide, population-based surveillance system for hemoglobinopathies in New York State through collaboration among the Newborn Screening program, Hemoglobin Specialty Treatment Centers, Medicaid program, the Congenital Malformations Registry, and other existing administrative database systems to integrate data collection of both short-term and long-term follow-up information for people in New York State with hemoglobinopathies.

Principal Investigators:

Ying Wang, PhD, MPH, is the Principal Investigator, Chief of the Informatics Unit of the Congenital Malformations Registry (CMR) of the New York State Department of Health. Dr. Wang has years of experience in epidemiological research and population-based public health surveillance. Under her guidance and supervision, the staff in the Informatics Unit have developed and implemented a web-based integrated birth defect surveillance system that enables CMR staff to routinely perform surveillance activities such as monitoring the quality, timeliness and completeness of case reporting by hospitals; matching the CMR cases to the vital records; conducting trends analysis on birth defect prevalence and mortality; and performing temporal and spatial analysis.

Michele Caggana, Sc.D., FACMG, is the Co-Principal Investigator and Director of the Newborn Screening Program of NYSDOH and is primarily responsible for the operation of the NBS program. Dr. Caggana established the Newborn Screening DNA Laboratory, which tests more than 13,000 samples per year for cystic fibrosis, galactosemia, medium chain acyl-CoA dehydrogenase deficiency, and Krabbe disease. Dr. Caggana oversees activities in data collection, dataset preparation of confirmed newborns with follow-up information and confirmatory testing results, and assists Dr. Wang with the overall coordination and technical direction of the project.

Project Coordinator

Mary Tandy-Walters, MS
New York State Department of Health
Center for Environmental Health
Congenital Malformations Registry
547 River Street, Room 430
Troy, New York 12180
Phone: (518) 402-7725
Email: mlw05@health.state.ny.us

NY- RuSH Project Overview

Background

Hemoglobinopathies, the diseases characterized by abnormal hemoglobin in the blood, are among the most prevalent hereditary disorders in humans. Annually, about 300,000-500,000 infants are born with major hemoglobinopathies worldwide. Hemoglobinopathies occur at some of their highest frequencies in tropical regions including the Mediterranean, Africa and Asia and in many countries with large numbers of immigrants from these regions. The high frequency and clinical severity of the hemoglobinopathies make them a major global public health problem. Currently, there is no existing population-based system for tracking the diseases nationally and estimating the prevalence of hemoglobinopathies. Similarly, there are no means for conducting a complete assessment of the epidemiology of hemoglobinopathies. NYS is one of the largest states by population in the US with about 19 million residents. The NYS population is diverse with regard to race and ethnicity: 15.1% Hispanic, 15.9% Black and 5.6% Asian. In addition, about 20.4% are foreign born and 14.1% are below the poverty level. Annually, about 250 children with sickle cell disease and thalassemia will be diagnosed among approximately 250,000 NYS newborns. A majority (85%) of these 250 children were born to black mothers.

Objective

The primary goal of this project is to establish a statewide, population-based surveillance system for hemoglobinopathies in New York State in order to achieve the final goal of development of a statewide hemoglobinopathy registry. The objectives in achieving the goal include:

  • Enhancing collaboration and coordination among the Newborn Screening Program, Hemoglobinopathy Specialty Treatment Centers, the Congenital Malformations Registry, Medicaid, and other existing administrative database systems such as vital statistics and hospital discharge data to integrate the data collection of short-term and long-term follow-up information for children with confirmed hemoglobin disorders identified through newborn screening;
  • Enhancing the capacity of case finding and record linkage and generating new data collection capacity for effective surveillance of the non-pediatric population using multiple data sources such as vital records, hospital discharges, Medicaid database and clinical records from the specialty treatment centers;
  • Developing an integrated database system containing information on heath outcome and healthcare utilization collected through both short-term and long-term follow-up of the study cohort that can be used for data analysis, dissemination and reporting of de-identified individual level data to the CDC; and
  • Building capacity for program evaluation and assessing the challenges and opportunities of this project will help to lay the foundation for future development of a population-based hemoglobinopathy registry in New York State.

Partnerships & Collaboration

  • Newborn Screening Program, New York State Department of Health
  • Congenital Malformations Registry, New York State Department of Health
  • Medicaid Program, New York State Department of Health
  • Center for Community Health, New York State Department of Health
  • Office of Vital Statistics, New York City Department of Health and Mental Hygiene
  • Hemoglobinopathy Specialty Treatment Centers
  • Community-Based Organizations

Project Team Members

  • Joseph Anarella, Division Quality and Evaluation, NY State Department of Health
  • John Berninger, B.S., Newborn Screening Program NY State Department of Health
  • Michele Caggana, SC.D., FACMG, Newborn Screening Program, NY State Department of Health
  • Katharine Harris, MBA, Newborn Screening Program, NY State Department of Health
  • Marilyn Kacica, MD, MPH, Division of Family Health, NY State Department of Health
  • Joseph Kennedy, MPH, Division of Vital Statistics, NY City Department of Health & Mental Hygiene
  • Amanda Kufs, M.Ed, Division of Family Health, NY State Department of Health
  • Christopher Kus, MD, MPH, Division of Family Health, NY State Department of Health
  • Geraldine Roth, B.S., Congenital Malformations Registry, NY State Department of Health
  • Patrick Roohan, MS, Division of Quality and Evaluation, NY State Department of Health
  • Adrianna Takada, PhD, Division of Quality and Evaluation, NY State Department of Health
  • Mary Tandy-Walters, MS, Congenital Malformations Registry, NY State Department of Health
  • Sanil Thomas, Congenital Malformations Registry, NY State Department of Health
  • Meg Toombs-Rathbun, Newborn Screening Program, NY State Department of Health
  • Ying Wang, PhD, MPH, Congenital Malformations Registry, NY State Department of Health
  • Regina Zimmerman, MD, MPH, Division of Vital Statistics, NY City Department of Health & Mental Hygiene

Advisory Committee

  • Nancy Green, MD, Columbia University Medical Center - Committee Chair
  • Rita Bellevue, MD, New York Methodist Hospital Sickle Cell Thalassemia Program
  • Donnette Carrol, Sickle Cell Thalassemia Patients Network
  • Gina Cioffi, Cooley’s Anemia Foundation
  • Patricia Giardina, MD, New York Presbyterian Hospital
  • Katharine Harris, MBA, NYS Genetic Service Program, NYSDOH
  • Suzette Oyeku, MD, MPH, Albert Einstein College of Medicine
  • Beth Shaz, MD, New York Blood Center
  • Richard Sills, MD, Children’s Cancer and Blood Disorders, SUNY Health Science Center
  • Kusum Viswanathan, MD, Brookdale Hospital & Medical Center
  • Barbara Wallace, MD, MSPH, Division of Chronic Disease and Injury Prevention, NYSDOH

Data Sources

  • NYS Newborn Screening Program - The NBS Program at the Wadsworth Center performs more than 11 million tests annually on approximately 250,000 babies born in New York State for more than 40 inherited metabolic conditions, congenital hypothyroidism, and hemoglobinopathies, including sickle cell disease and thalassemia.
  • NYS Congenital Malformations Registry - The NYS CMR at the Center for Environmental Health was established as part of the Environmental Disease Surveillance Program in 1982. Hospitals and physicians are required to report to the CMR all children two years of age or younger, who were born or reside in New York State, and were diagnosed with major birth defects.
  • NYS Vital Records - Birth and death certificate files of NYS residents are maintained in the Bureau of Biometrics and Health Statistics of the NYSDOH. Birth certificates contain variables on demographics, maternal medical conditions and risk factors and life style risk factors. Death certificates contain information on demographics and cause of death information.
  • NYC Vitals Records - Approximately 125,000 births and 50,000 deaths occur annually in New York City, records of which are filed, issued and maintained by the NYC Department of Health and Mental Hygiene’s Bureau of Vital Statistics. Birth certificates contain variables on demographics, maternal prenatal care, medical conditions and risk factors and newborn health. Death certificates contain information on demographics and cause of death. Such data are used to describe the health of the population of New York City.
  • NYS Hospital Discharge Files - Hospital discharge files containing inpatient and outpatient data are routinely collected and maintained by the Statewide Planning and Research Cooperative System (SPARCS) of the NYSDOH. The SPARCS was implemented by the NYSDOH in 1979 and is a comprehensive, integrated information system which receives, processes, stores, and analyzes the inpatient hospitalization data from all facilities in NYS and ambulatory surgery data from hospital-based ambulatory surgery services and all other facilities providing ambulatory surgery services.
  • NYS Medicaid Program - Medicaid is a jointly funded Federal and State health insurance program for low-income and medically needy persons. NYSDOH maintains enrollment and service utilization data for all NY Medicaid recipients.
  • Hemoglobinopathy Specialty Treatment Centers - Currently, there are 37 pediatric and 22 non-pediatric Hemoglobinopathy Specialty Treatment Centers (HbSTCs) across New York State. The Newborn Screening Program (NBS) is able to obtain the confirmatory diagnostic testing and diagnosis information of the affected children from the HbSTCs

Education & Resources:

  • CDC Hemoglobinopathies Monitoring (RuSH) www.cdc.gov/ncbddd/sicklecell/RuSH_FAQs.html
  • National Organization for Rare Disorders (NORD) www.rarediseases.org
  • Sickle Cell Disease Association of America, Inc. www.sicklecelldisease.org
  • Sickle Cell Thalassemia Patients Network www.sctpn.net
  • Cooley’s Anemia Foundation www.thalassemia.org
  • Queens Sickle Cell Advocacy Network www.qscan.org
  • Parent to Parent of New York State www.parenttoparentnys.org
  • The Office of Minority Health http://minorityhealth.hhs.gov/
  • Strategies from the Field - Health Promotion

Transition to Adult Care

  • Pediatric Centers for Hemoglobinopathies in New York State (under construction)
  • Adult Care Centers for Hemoglobinopathies in New York State (under construction)

Service Maps for NYS Sickle Cell Specialty Care Centers

NY – RuSH Brochure