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Thalassemia Longitudinal Cohort (TLC) Study

The TLC Study is the newest study to begin for the TCRN group. Because of the success of the Network Enrollment Study and the new information that was gathered and published, it was decided that the next study should be a long term follow-up study.

In this study, patients will be enrolled and then will be followed yearly for 3 years. The yearly visits will include Quality of Life forms and clinical evaluations such as Cardiac MRI T2*, lab tests and nutrition screens with a bone DEXA scan. The TCL continues to correspond to the following seven areas identified by the TCRN Steering Committee as critical in thalassemia research:

  • Cardiac disease and pulmonary hypertension
  • Iron measurement and chelation
  • Hepatitis C and liver disease
  • Growth and development, endocrine status and fertility (including bone health and pregnancy)
  • Nutrition status
  • Strategies for enhancing fetal hemoglobin
  • Psychosocial issues, including quality of life
  • Measures of compliance with prescribed regimens

The TLC Study is currently enrolling patients. This study will focus on patients who are chronically transfused or have other medical complications from their thalassemia. If you are interested in this study or would like more information, please contact Nancy Sweeters, RN, PNP at Children's Hospital & Research Center at Oakland, 510-428-3885, ext. 4151 or ask your clinical care provider.

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