Plasminogen Deficiency Registry – Powered By ATHN

Plasminogen deficiency is a rare disorder that leads to numerous well-documented manifestations. Unfortunately, at this time there is no effective replacement therapy available. A variety of conditions result from this deficiency, which necessitates that several medical specialties provide care to these patients. The most well defined condition associated with plasminogen deficiency is ligneous conjunctivitis. While ligneous conjunctivitis is a classic manifestation of this disorder, several other systems may be affected, including the ears, sinuses, tracheobronchial tree, genitourinary tract, and gingiva. Due to the numerous multi-system clinical manifestations, the frequency of this disorder is not well characterized, and therefore it is difficult to predict the demand that might exist for a replacement product if it were developed.

Researchers, Rakesh Mehta, MD, Assistant Professor of Clinical Medicine, Section of Hematology/Oncology at the Indiana University School of Medicine and Amy D. Shapiro, MD, Medical Director of the Indiana Hemophilia and Thrombosis Center in Indianapolis have received funding from Baxter Bioscience to develop a plasminogen deficiency registry to begin determining the approximate number and type of patients in the U.S. and Canada who present with signs and symptoms of this disorder.  ATHN is assisting Drs. Mehta and Shapiro to develop and host a web-based e-survey that will help identify patients with this disorder.  The survey will collect information from a broad base of providers including the network of federally recognized HTCs and targeted specialties that may be caring for or seeing patients with plasminogen deficiency such as ophthalmology, oral surgery, otolaryngology and hematology.  It is hoped that this information will serve as a foundation for developing a network of health care providers that may be utilized for information sharing and that will ultimately enable the identification of potential subjects for future clinical trials for a plasminogen replacement product.

Watch for more details over the next several months so that your patients can be counted.

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