Abstract

Sickle Cell Disease (SCD) is the most common genetic disease affecting African Americans in the U.S. SCO contributes to significant morbidity and mortality among affected persons. Researchers report difficulty in recruiting adults with SCD for participation in medical research. This study will examine willingness to participate in medical research among adults with SCD. Focus groups and a cross-sectional survey will be used to answer four research questions: 1) What are the beliefs and concerns towards participation in medical research expressed by adults with SCD? 2) Do levels of trust in physicians (interpersonal trust) and medical institutions (institutional trust) differ between adults with SCD receiving care at a historically black medical institution and those that are not? 3) Does willingness to participate in medical research differ between adults with SCD receiving care at a historically black medical institution and those that are not? 4) What factors will be associated with the adult SCD patient's willingness to participate in medical research? Results of the study will be used to better understand those factors associated with research participation among adults with SCD.

  Funding Agency

Agency
National Institute of Health (NIH)
Institute
National Heart, Lung, and Blood Institute (NHLBI)
Type
Predoctoral Individual National Research Service Award (F31)
Project #
5F31HL082037-03
Application #
7273664
Study Section
Special Emphasis Panel (ZRG1-BDCN-L (29))
Program Officer
Werner, Ellen
Project Start
2005-07-25
Project End
2009-07-24
Budget Start
2007-07-25
Budget End
2008-07-24
Support Year
3
Fiscal Year
2007
Total Cost
$44,464
Indirect Cost

  Institution

Name
Johns Hopkins University
Department
Public Health & Prev Medicine
Type
Schools of Public Health
DUNS #
001910777
City
Baltimore
State
MD
Country
United States
Zip Code
21218

  Publications

Haywood Jr, Carlton; Beach, Mary Catherine; Bediako, Shawn et al. (2011) Examining the characteristics and beliefs of hydroxyurea users and nonusers among adults with sickle cell disease. Am J Hematol 86:85-7
Lanzkron, Sophie; Haywood Jr, Carlton; Fagan, Peter J et al. (2010) Examining the effectiveness of hydroxyurea in people with sickle cell disease. J Health Care Poor Underserved 21:277-86
Haywood Jr, Carlton; Lanzkron, Sophie; Ratanawongsa, Neda et al. (2010) The association of provider communication with trust among adults with sickle cell disease. J Gen Intern Med 25:543-8
Haywood Jr, Carlton; Lanzkron, Sophie; Ratanawongsa, Neda et al. (2010) Hospital self-discharge among adults with sickle-cell disease (SCD): associations with trust and interpersonal experiences with care. J Hosp Med 5:289-94
Carroll, C Patrick; Haywood Jr, Carlton; Fagan, Peter et al. (2009) The course and correlates of high hospital utilization in sickle cell disease: Evidence from a large, urban Medicaid managed care organization. Am J Hematol 84:666-70
Lanzkron, Sophie; Haywood Jr, Carlton; Hassell, Kathryn L et al. (2008) Provider barriers to hydroxyurea use in adults with sickle cell disease: a survey of the Sickle Cell Disease Adult Provider Network. J Natl Med Assoc 100:968-73
Lanzkron, Sophie; Haywood Jr, Carlton; Segal, Jodi B et al. (2006) Hospitalization rates and costs of care of patients with sickle-cell anemia in the state of Maryland in the era of hydroxyurea. Am J Hematol 81:927-32