Aims: To define the natural history and outcomes of patients with desmoid tumors, a rare, locally invasive soft tissue tumor. Methods: Collaborate with Fu Jen University, Taiwan to use a record linkage approach with the Taiwan National Health Insurance Research Data Base (NHIRD) that contains clinical information on 23 million people. Use ICD 10 codes and key words to pull pathology records for review; review 100 records or more to develop an algorithm to ensure specificity; mine the data and develop steps for descriptive epidemiology. Innovation: Data generated from this project will further the understanding of the disease course, impact of available interventions, and the burden of the disease for an individual patient and society as a whole. It will inform the design of future clinical trials for therapeutic interventions in patients with desmoid and could lead to the development of a new treatment for a disease for which there is currently no US Food and Drug Administration (FDA) approved systemic treatment. The pilot project could become the prototype of studying rare diseases using Big Data.
LAY VERSION OF ABSTRACT- Desmoid Tumors for Big Data Linkage