Fanconi anemia (FA) is the most common genetic form of aplastic anemia; a recessive disorder characterized by a progressive pancytopenia, diverse congenital abnormalities, and a predisposition to malignancy. The Clinical Research Coordinator will work directly with the Principal Investigator on all aspects of the International Fanconi Anemia Registry (IFAR), studying a large number of patients exhibiting the spectrum of diverse features of FA to address questions relating to diagnosis, prognosis, and treatment. Must participate in recruitment, enrollment, and follow-up, including medical record requests and review, data extraction, and input into a web-based application. Will regularly communicate with participants and families, as well as referring physicians, and document all encounters accordingly. The Clinical Research Coordinator will also coordinate and conduct Rockefeller University Hospital outpatient appointments as needed, and assist with IRB applications, grant writing, and communications when needed. Must continue with ongoing needs assessment and project management of online database development.
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