Longitudinal data collection for sickle cell disease in California : history, goals and challenges

Details

• Personal Author:
  Paulukonis, Susan T. ; Raider, Faith ; Hulihan, Mary M.
• Corporate Authors:
  Public Health Institute (Calif.). California Rare Disease Surveillance Program. ; Public Health Institute (Calif.). California Environmental Health Trackin Program. ; National Center on Birth Defects and Developmental Disabilities (Centers for Disease Control and Prevention). Division of Blood Disorders. ; Pfizer, Inc. ; Biogen, Inc. ; CDC Foundation.
• Description:
  Sickle cell disease (SCD) is the most common severe genetid disease. It impacts approximately 7,000 people in California and nearly 90,000 in the U.S. And yet remarkably little is known about the population impacted by SCD as a whole. Only recently has this disease become part of the nation’s public health agenda. Estimates of the prevalence of disease are not based on patient counts but rather on extrapolations of newborn screening data using data on life expectancy (itself extrapolated from other data) or based on patient counts from hospital discharge databases. While much is known of the pathophysiology of the disease, little is understood about the impact of the disease on people, particularly adults, living with SCD.
  
  The Sickle Cell Disease Longitudinal Data Collection project in California extends over five years of successful SCD surveillance in the state as part of the Center for Disease Control and Prevention’s (CDC) and National Heart, Lung and Blood Institute’s Registry and Surveillance System in Hemoglo- binopathies (RuSH) and CDC’s Public Health, Research, Epidemiology and Surveillance in Hemoglobinopathies (PHRESH) cooperative agreements. The goals of this new effort are to continue using and to improve upon developed methods and data sources for understanding SCD at the pop- ulation level in the state as well as to analyze the data collected and dis- seminate them to audiences that will drive policy and health care chang- es, leading to improvements in quality of life, life expectancy and health among those living with SCD.
  
  The Sickle Cell Disease Longitudinal Data Collection System project in California is made possible through funding support from Pfizer, Inc. and Biogen to the CDC Foundation.
  
  donor-report-010416.pdf
  
  
• Subjects:
  Anemia, Sickle Cell Longitudinal Studies Population Surveillance
• Document Type:
  Report
• Place as Subject:
  California
• Pages in Document:
  27 numbered pages
• Collection(s):
  Stephen B. Thacker CDC Library
• Main Document Checksum:
  urn:sha256:91b59a87e52e191f9046a648ee167587ce65ebe638c676286178f8fedb6b7b2e
• Download URL:
  https://stacks.cdc.gov/view/cdc/56853/cdc_56853_DS1.pdf
• File Type:
  [PDF - 922.47 KB ]