Registry and Surveillance System for Hemoglobinopathies (RuSH) - Establishment and use of the North Carolina SCD and Thalassemia Client Surveillance Program (NC_SCDTCSP) – UNCG

Research output: Other contributionOther

Abstract

Funding Agency: NC DOH from the CDC/NHLBI

Total Amount: $221,168 (total funding to UNCG)

Percent Effort on Project: 20%, plus staff for the DEC

Funding Period: 6/2009-2/2013 (3 Years)

Role on Project: Co-Principal Investigator/Project evaluator (PI, Ms. Belinda Pettiford, NC Division of Public Health)

Project Description: While past efforts on the part of researchers and professionals have led to more effective treatments of the complications associated with SCD, little is known about the social epidemiology of SCD and Thalassemia (that is, critical and accessible data on the physical, psychological and social aspects of these hemoglobinopathies). Questions about access, differential outcomes, and use of health and social services of persons with SCD and Thalassemia, remain largely unanswered. Consequently, there are many unknown issues about the lives of persons with SCD and Thalassemia outside of the treatment setting. Key questions illuminating the proportion of persons experiencing the challenges and successes of day-to-day functioning, such as physical challenges effecting work or school attendance and other activities, or the ability to access or use key health care and social services, need to be answered. To begin to add new knowledge to our understanding of the lives of persons with SCD and Thalassemia, and to provide a state-level socio-epidemiological counterpart to previous clinical data efforts (such as the Cooperative Study of Sickle Cell Disease – CSSCD), the state of North Carolina in collaboration with its partners and the CDC proposes to establish, maintain and use a comprehensive population-based data surveillance system for persons with SCD and Thalassemia in North Carolina.

Original languageAmerican English
StatePublished - 2009

Disciplines

  • Community Health
  • Community Health and Preventive Medicine
  • Public Health
  • Public Health Education and Promotion

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