Given the complex nature of thalassemia, with its myriad manifestations and potential complications, the need for continuing comprehensive care cannot be emphasized enough.
From diagnosis, to the decision to initiate transfusions, to the individual approach to these transfusions, an experienced team is critical to the early care of individuals with thalassemia. Ensuring that growth and development are proceeding normally, monitoring the rise of transfusion-related iron overload, and initiating chelation therapy based on state-of-the-art MRI iron quantification methods are all elements of our careful monitoring process. Anticipating and preventing or treating complications such as gallbladder disease and iron-induced endocrine dysfunction reduces overall morbidity and ensures as near normal a quality of life as possible. Ongoing monitoring of cardiac and liver iron concentration, bone health and heart, liver, kidney and endocrine gland organ function is accomplished by our multidisciplinary team of providers who have experience and expertise specific to thalassemia. The importance of psychosocial support and counseling, along with other services like genetic counseling, are important in rounding out all aspects of dealing with this lifelong inherited condition.
The New York Comprehensive Thalassemia Center (NYCTC) also enables patients to stay abreast of the most recent developments in research through frequent patient meetings and discussion at annual comprehensive care visits. The NYCTC conducts clinical studies and participates in multicenter trials of newer therapies, encouraging patients to participate and contribute to our better understanding of their disease, and in turn benefitting the thalassemia research field itself and future generations of patients.
The NYCTC has assembled a multidisciplinary team of physicians and providers, all of whom have deep interest, experience and expertise in treating patients with thalassemia. This includes cardiologists, nephrologists, gastroenterologists, endocrinologists, high-risk obstetricians, fertility experts, orthopedists and bone specialists, geneticists and genetic counselors, social workers and psychologists. State-of-the-art imaging facilities with expert radiologists provide patients with the most modern methods for ongoing assessment of tissue iron and iron-induced complications.
All of our facilities are provided in one location, NewYork-Presbyterian Hospital/Weill Cornell Medical Center, an internationally recognized academic hospital and medical research facility.