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Date of Award


Document Type

Thesis - Campus Access Only

Degree Name

MS in Human Genetics


Human Genetics Graduate Program


Thalassemia is a chronic genetic condition that lowers the quality of life of affected individuals. Similar chronic conditions including sickle cell disease have developed transition plans to improve care, but a transition plan for people with thalassemia has yet to be created. This dissertation describes an original study in which people affected by thalassemia completed a questionnaire about their current thalassemia treatment experience and their preferences for a healthcare transition plan. My goals were to determine if people with thalassemia living in North America are seen by pediatric or adult physicians, what their healthcare experience has been, and what they would like to see included in a transition plan. This study illustrates the value of healthcare transition programs for thalassemia and the major components of a transition plan that are important to this patient population.