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. Author manuscript; available in PMC: 2016 Apr 1.
Published in final edited form as: J Pediatr Hematol Oncol. 2015 Apr;37(3):e162–e169. doi: 10.1097/MPH.0000000000000307

Table I.

Summary of Referenced Thalassemia Clinical Research Network Studies

TCRN STUDY PARTICIPANTS STUDY PURPOSE REFERENCE (See Appendix A for full citation)
Thalassemia Cross-Sectional Registry Enrolled patients at TCRN sites, 2000-06 A registry to characterize demographic and clinical features of patients with thalassemia Cunningham, 2004 [1]
TCRN Pain Study All TCRN participants A comprehensive assessment of pain in thalassemia Haines, 2013 [4]
Low Bone Mass Cross-sectional Observational Study (LBMCOS) TCRN participants over age 6 years A cross-sectional study of the prevalence of low bone mass, fractures, and bone pain in patients with thalassemia Vogiatzi, 2009 [18]
Thalassemia Longitudinal Cohort (TLC) Enrolled patients at TCRN sites, 2007-09 A longitudinal registry to measure the prevalence and incidence of complications of thalassemia Kwiatkowski, 2012 [7]