Epidemiological Study

PXE International is conducting a very important research study on 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 research study is to gain an understanding of the signs and symptoms of PXE, and the results of current treatments of PXE.

Some of the aspects of PXE that will be studied by this survey include:

• How often symptoms and signs occur
• How much skin, eye, gastrointestinal, cardiovascular and neurologic organs are involved
• Outcomes of treatment for eye involvement
• How people cope with low vision
• 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.
  
  Get a Free Email Account
  Gmail from Google is an easy, free and safe way to get an email account that you can access from any computer.
  
  To sign up for a free Gmail account, follow the steps below, and then let us know your new email address! Email us at info@pxe.org.

  1. Type www.gmail.com in the address bar of a browser.
  2. Look to the right of the screen when the website has loaded. Look under the login area for Create an Account. Click this.
  3. Fill in your required personal information.
  4. Create a login name (which will be your email address) and choose a password.
  5. Make sure to include all required information and read the terms of use policy located at the bottom of the page.
  6. Once you have agreed to the terms and privacy policies, select "I accept. Create my account" and Gmail will do the rest.
  7. Log into your account later by visiting www.gmail.com and entering your email and password in the login box located to the right of the screen.
  If you cannot get your own email address or do not own a computer, you can 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 email Clarissa Sellers, our research assistant, to get started!
• Paper survey. PXE International can send a paper survey to you by US mail.
• By phone. A staff member can help you fill out the survey by phone. Simply call 202-362-9599.

Once you have informed us about your intent to participate in the study, please be patient. There are many people participating in the study and it may take some time for us to respond to you.

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 PXE. 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!

Once you have informed us about your intent to participate in the study, please be patient. There are many people participating and it may take some time for us to respond to you.