Comprehensive Care in Patients with Thalassemia and Severe Congenital Anemias
Primary Investigator: Sujit Sheth
This observational longitudinal study follows the natural history of thalassemia and other severe congenital anemias including complications of iron excess. Regular transfusion and iron chelation therapy are the standards of care for these patients. Standard treatment provided by the Weill Cornell Medicine New York Comprehensive Thalassemia Center includes baseline studies prior to the start of chelation therapy, and annual monitoring thereafter.
PROMIS as a Novel, Patient-Reported Outcome (PRO) Tool in Adult Patients with Congenital Blood Disorders
Primary Investigator: Sujit Sheth
This Patient Reported Outcome Measurement Information System (PROMIS) initiative utilizes multiple question banks related to physical and social function, pain and other domains. PROMIS is free, and was developed based on a U.S. population with chronic illnesses. PROMIS is administered through computer-adaptive testing, which allows for rapid questioning and incorporation of multiple item banks into a single tool.