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Epidemiological Study

PXE International is conducting an important research study on pseudoxanthoma elasticum (PXE), and we need your help! We are asking all individuals affected by PXE to participate simply by filling out an online survey.

Parents, we need you to do this for your affected children if they are too young to fill it out for themselves. Vision impaired? No computer? No problem! There are several ways you can submit your information, which are explained below. 

 


What Is the Epidemiological Study?


The purpose of this study is to learn more about the characteristics of the population affected by PXE (epidemiology), the natural history of the disease, and its impact on those affected by PXE. Some of the aspects of PXE that will be studied by this survey include:

  • Gender distribution of PXE
  • Relative frequency of various presenting symptoms and signs
  • Incidence of skin, eye, gastrointestinal, cardiovascular, and neurologic involvement
  • Outcomes of treatment for eye involvement
  • How people cope with low vision
  • Influence of known cardiovascular risk factors on the incidence and severity of cardiovascular disease in PXE
  • Effects of PXE on pregnancy

 


How You Can Participate


Participating in this study is easy. There are a few ways to fill out the survey:

  • Online (preferred!). Completing the survey online is the preferred method. You will need a valid email address. Submit your email address to PXE International by registering with us. If you don't have an email address and would like one, see these directions for setting up a free email account. You can also use the email address of a trusted friend or family member, and ask them to help you. If you are already registered with PXE International, simply click on the "I am interested in participating" button to get started!
  • Paper survey. PXE International can send a paper survey to you by US mail.
  • By phone or email. A staff member can help you fill out the survey by phone. Simply email Farrah Asgari-Majd or call her at 202-362-9599, extension 252.

 


Confidentiality


All data you contribute is coded so that your personal information (name, address, phone number) can be separated from the information you supply about your experience with pseudoxanthoma elasticum. Researchers do not have access to your identifying information. Results are analyzed anonymously.

If you have any questions or concerns, please do not hesitate to call our office at 202-362-9599. Thank you for your participation!


 

Last modified: 09/12/2014