Mary M Hulihan1, Lisa Feuchtbaum2, Lanetta Jordan3, Russell S Kirby4, Angela Snyder5, William Young6, Yvonne Greene7, Joseph Telfair8, Ying Wang9, William Cramer10, Ellen M Werner11, Kristy Kenney1, Melissa Creary1, Althea M Grant1. 1. Division of Blood Disorders, Centers for Disease Control and Prevention, Atlanta, Georgia, USA. 2. Genetic Disease Screening Program, California Department of Public Health, Richmond, California, USA. 3. Miller School of Medicine, University of Miami, Miami, Florida, USA. 4. College of Public Health, University of South Florida, Tampa, Florida, USA. 5. Georgia Health Policy Center, Andrew Young School of Policy Studies, Georgia State University, Atlanta, Georgia, USA. 6. Michigan Department of Community Health, Lansing, Michigan, USA. 7. North Carolina Department of Health and Human Services, Raleigh, North Carolina, USA. 8. Jiann-Ping Hsu College of Public Health, Georgia Southern University, Statesboro, Georgia, USA. 9. New York State Department of Health, Albany, New York, USA. 10. Pennsylvania Department of Health, Harrisburg, Pennsylvania, USA. 11. National Heart Lung and Blood Institute, National Institutes of Health, Bethesda, Maryland, USA.
Abstract
PURPOSE: The lack of an ongoing surveillance system for hemoglobinopathies in the United States impedes the ability of public health organizations to identify individuals with these conditions, monitor their health-care utilization and clinical outcomes, and understand the effect these conditions have on the health-care system. This article describes the results of a pilot program that supported the development of the infrastructure and data collection methods for a state-based surveillance system for selected hemoglobinopathies. METHODS: The system was designed to identify and gather information on all people living with a hemoglobinopathy diagnosis (sickle cell diseases or thalassemias) in the participating states during 2004-2008. Novel, three-level case definitions were developed, and multiple data sets were used to collect information. RESULTS: In total, 31,144 individuals who had a hemoglobinopathy diagnosis during the study period were identified in California; 39,633 in Florida; 20,815 in Georgia; 12,680 in Michigan; 34,853 in New York, and 8,696 in North Carolina. CONCLUSION: This approach provides a possible model for the development of state-based hemoglobinopathy surveillance systems.
PURPOSE: The lack of an ongoing surveillance system for hemoglobinopathies in the United States impedes the ability of public health organizations to identify individuals with these conditions, monitor their health-care utilization and clinical outcomes, and understand the effect these conditions have on the health-care system. This article describes the results of a pilot program that supported the development of the infrastructure and data collection methods for a state-based surveillance system for selected hemoglobinopathies. METHODS: The system was designed to identify and gather information on all people living with a hemoglobinopathy diagnosis (sickle cell diseases or thalassemias) in the participating states during 2004-2008. Novel, three-level case definitions were developed, and multiple data sets were used to collect information. RESULTS: In total, 31,144 individuals who had a hemoglobinopathy diagnosis during the study period were identified in California; 39,633 in Florida; 20,815 in Georgia; 12,680 in Michigan; 34,853 in New York, and 8,696 in North Carolina. CONCLUSION: This approach provides a possible model for the development of state-based hemoglobinopathy surveillance systems.
Authors: Kathryn Hassell; Betty Pace; Winfred Wang; Roshni Kulkarni; Naomi Luban; Cage S Johnson; James Eckman; Peter Lane; William G Woods Journal: Am J Hematol Date: 2009-01 Impact factor: 10.047
Authors: Otis W Brawley; Llewellyn J Cornelius; Linda R Edwards; Vanessa Northington Gamble; Bettye L Green; Charles Inturrisi; Andra H James; Danielle Laraque; Magda Mendez; Carolyn J Montoya; Brad H Pollock; Lawrence Robinson; Aaron P Scholnik; Melissa Schori Journal: Ann Intern Med Date: 2008-05-05 Impact factor: 25.391
Authors: Cindy E Neunert; Robert W Gibson; Peter A Lane; Pragya Verma-Bhatnagar; Vaughn Barry; Mei Zhou; Angela Snyder Journal: Am J Prev Med Date: 2016-07 Impact factor: 5.043
Authors: Susan T Paulukonis; Lisa B Feuchtbaum; Thomas D Coates; Lynne D Neumayr; Marsha J Treadwell; Elliott P Vichinsky; Mary M Hulihan Journal: Pediatr Blood Cancer Date: 2016-12-21 Impact factor: 3.167
Authors: Sarah L Reeves; Brian Madden; Meng Wu; Lauren S Miller; David Anders; Michele Caggana; Lindsay W Cogan; Mary Kleyn; Isabel Hurden; Gary L Freed; Kevin J Dombkowski Journal: Health Serv Res Date: 2020-01-09 Impact factor: 3.402
Authors: Susan T Paulukonis; James R Eckman; Angela B Snyder; Ward Hagar; Lisa B Feuchtbaum; Mei Zhou; Althea M Grant; Mary M Hulihan Journal: Public Health Rep Date: 2016 Mar-Apr Impact factor: 2.792
Authors: Michele G Beckman; Mary M Hulihan; Vanessa R Byams; Meredith A Oakley; Nimia Reyes; Sean Trimble; Althea M Grant Journal: Am J Prev Med Date: 2014-09-19 Impact factor: 5.043
Authors: Angela B Snyder; Mei Zhou; Rodney Theodore; Maa-Ohui Quarmyne; James Eckman; Peter A Lane Journal: Public Health Rep Date: 2019-04-10 Impact factor: 2.792