Your experience of living with PXE is the only way we will come to understand pseudoxanthoma elasticum (PXE) enough to find a treatment or therapy. Parents, we need you to answer the survey 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 PXE & LIFE Survey?
PXE & LIFE is a program to help you! In it, PXE International and you are setting out to discover how we can be healthier. This includes working to discover a treatment and understanding what lifestyle changes or habits might improve health for people affected by PXE.
The first step is an extensive survey to understand where everyone is now. The purpose of this survey is to learn more about the characteristics of the population affected by PXE (epidemiology) and the natural history of the disease. We also aim to understand how living with the condition affects your life. Some of the aspects of PXE that will be studied by this survey include:
- Frequency of various symptoms and signs
- Incidence of skin, eye, gastrointestinal, cardiovascular, and neurologic involvement
- Outcomes of eye treatments
- How to cope with low vision
- Effects of PXE on pregnancy and pregnancy on PXE
- Undiscovered symptoms that might be caused by PXE
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. Click the "I AM INTERESTED IN PARTICIPATING" button and you will be directed back to the Home Page. At the Home Page you will set up an account just like you do an online bank account. Then you will set your preferences for sharing and privacy. If you cannot do the survey alone (vision impaire, not comfortable with the computer), please find a family member or friend to help you - it will help us!
By phone or email. A staff member or volunteer can help you fill out the survey by phone. Simply email Eliza Duvall or call PXE International at 202-362-9599, extension 252, and she will coordinate with you.
Privacy and Confidentiality
All data you contribute are coded so that your personal information (name, address, phone number) can be separated from the information you supply about your experience with pseudoxanthoma elasticum. You decide who sees your health information!
If you have any questions or concerns, please do not hesitate to call our office at 202-362-9599. Thank you for your participation!
You can read about our extensive policies here: http://pxe.org/about-us/privacy
We will use the information from EVERYONE affected by PXE to understand the disease progression better, to help us determine what might help in delaying or slowing the disease. Some of the actions resulting from the survey will be research experiments that we must undertake. Some will be lifestyle changes that you will have to integrate into your life.