Hemophilia Study for Previously Untreated Patients
Children’s Mercy researchers are now enrolling patients in the U.S. cohort study Previously Untreated Patients with Congenital Hemophilia Matter. This study will be used to follow young patients with hemophilia over the course of the first few years of life.
Shannon Carpenter, MD, Associate Division Director, Hematology/ Oncology/BMT, Section Chief, Hematology; Director, Hemophilia Treatment Center and Professor of Pediatrics, University of Missouri- Kansas City School of Medicine, is serving as one of two U.S. principal investigators for the registry. Other partners are the American Thrombosis and Hemostasis Network, Blood Center of Wisconsin and Rady Children’s Hospital.
“We want to utilize this platform to enroll all children with hemophilia so that we can build a database to better study this rare disease.”
The study will be opened to other pilot sites around the country in order to closely examine how these children are treated, including which ones develop inhibitors during their first 50 exposure days, along with the characteristics of these patients.
Eventually, the goal is to open the study to all patients with hemophilia from around the country.