The purpose of this study is to continue to learn about impact of comprehensive care on the natural history of patients with thalassemia (Cooley’s anemia) and other severe anemias requiring periodic or regular red blood cell transfusions. We will collect data on guideline recommended measures obtained from the standard of care: routine tests (EKG, Echocardiogram, Holter Monitor, MRI, eye exam, hearing test, x-ray, bone studies, pulmonary function study) done once a year and monthly blood draw and urinalysis for complete blood count, chemistries, and iron studies. There are no treatments or drugs involved in this study.
Part of the study will take place at Payson 695. Some portions of the study may take place at facilities at New York Presbyterian Hospital, where investigators are members of the medical staff. New York Presbyterian is neither a sponsor nor an investigator for this study.
Open to both boys/girls and men/women above the age of 1 month to 90 years of age who have been diagnosed with thalassemia. Detailed eligibility will be discussed/reviewed with the study team.