The Plasminogen Deficiency Registry Survey
Plasminogen deficiency is an ultra-rare disorder that results in inflamed growths on the mucous membranes in the body. The condition was first established in 1997 and unfortunately, much about it is still unknown. For this project, ATHN is reaching beyond the hemophilia treatment centers (HTCs) to gather information about plasminogen deficiency via the Plasminogen Deficiency Registry Survey.
The survey collects information from a broad base of providers including the HTCs and targeted specialties that may be caring for patients with plasminogen deficiency, including ophthalmology, oral surgery, otolaryngology, hematology, and others.
The goal of this project is to collect data that will provide a better understanding of the condition, its prevalence, how it is diagnosed—and ultimately assist clinicians to improve care. In addition, this information will be used to conduct clinical research for new products targeted to plasminogen deficient patients.
If you are treating a patient with plasminogen deficiency, please take the survey today to add your patient to the registry.