PXE International is the prime force in conducting basic and clinical research and providing financial support - $2.3 million over the past 19 years! - for applied translational research, product development, and treatment development for Pseudoxanthoma Elasticum (PXE). We steward the intellectual property to equitably advance products and services around the world for the individuals and families living with PXE.
PXE & Life Survey
What is PXE & Life?
Remember taking the PXE survey in 2014-15? Well, your answers led to great discoveries, and we are now on the brink of clinical trials! We need to understand the progression of PXE symptoms thoroughly by answering questions about diagnosis, symptoms, quality of life, and more! Sign in to PXE & LIFE to complete surveys you didn't have time to answer the last time. You'll also find a new survey on your dashboard about injuries and mineralization that was created by some of our researchers! If this is your first time logging in, that's not a problem! All the surveys will be waiting for you once you create a profile. We want you in these clinical trials! Whether you took the survey a few years ago, or you’re a first time user, you can sign up by visiting www.pxe.org/registry.
Why should I participate in PXE & Life?
Research without all PXEers is like a puzzle with missing pieces - you can't see the whole picture! You have something unique to contribute and we need your piece of the puzzle! The goal of PXE & LIFE is to collect as much data as possible on every person living with PXE. If everyone completes PXE & LIFE, we may find new connections that could help us find new and more effective treatments.
What if I need help?
We have a team of trained ‘Navigators’ who are ready to help you complete PXE & LIFE! We know it’s sometimes easier to talk it through with someone who is familiar with the survey and the website. If you have trouble using a computer or need assistance in any other way, then let us help. Whether by phone call, email, skype, or FaceTime, navigators are here for you!
Set up an appointment by emailing firstname.lastname@example.org or calling (202) 362-9599 x252 and a navigator will set up a time to walk through PXE & Life and make it as easy as possible.
To sign in, please visit: www.pxe.org/registry.
More information on the PXE & Life Survey.
What is PXE LAB?
PXE International promotes research driven by, and centered on, people affected by PXE. PXE LAB is a forum for PXEers and researchers to brainstorm, collaborate, and develop a study on nutrition and exercise.
Why focus on nutrition and exercise?
PXEers gathered last year to talk about questions they wanted answered about PXE. PXE International compiled these questions and asked everyone in the community to tell us what was most important to them. You decided it was most important to know the answers to these questions: (click on each question to learn more!)
- What does the ABCC6 protein do?
- Can eye complications of PXE be reversed?
- Can we do stem cell experiments to alleviate manifestations of PXE?
- Are there any vitamins or minerals that are deficient in PXEers?
PXE International shared these results with you in a flier you can view by clicking here . The topic for PXE LAB, nutrition and exercise, came from all of your voices!
How does PXE LAB work?
1. Share Ideas: What’s most important for PXE research? PXE LAB is open to anyone willing to help develop a question regarding Nutrition and Exercise that we can test. PXE LAB also allows participants to “like” other comments. We want everyone’s voice to be heard!
2. Develop a Research Team: The Research Team will consist of PXE scientists, PXE International staff, and those affected by PXE: this could be anyone from the PXE community! The Research Team’s goal is to engage the PXE community, work out logistics, conduct, and complete research. Are you interested in being part of the Research Team? Please email Eliza [email@example.com].
3. Collect Data: The Research Team will determine methods to collect data based on suggestions from this discussion. We might do surveys, suggest self-tracking devices for exercise, or offer trackers for logging your eating habits. We need EVERYONE to participate for stronger and more accurate results.
4. Analyze Data: The Research Team will work together to analyze the data collected by using statistical methods. The Research Team will conclude if any correlation exists between PXE and Nutrition and Exercise.
5. Share Results: The Research Team will summarize the results of PXE LAB and share them with the entire PXE Community!
Join the discussion by clicking here!
Do you have a child with PXE? We need you for a research study!
An important component in learning about the signs and symptoms of PXE is studying the progression of PXE in children. We are now recruiting for a study involving children 18 years and younger who have been diagnosed with PXE. You will answer questions about your child's clinical symptoms of PXE and donate a sample (a simple cheek swab) of your child's DNA for analysis. Please email Eliza at firstname.lastname@example.org, PXE International's Research Manager, immediately for more information. Or call 202.362.9599, extension 252.
How can PXEers participate in research?
Donate to support research efforts
Finding a treatment for pseudoxanthoma elasticum begins with you. Donate to support PXE research efforts. Thank you!
|Magnesium supplement clinical trial underway
A two-year study of oral magnesium supplementation began January 2013 with 44 volunteers participating.
Follow the progress of the study.
2013 PXE Research Update
October 29, 2013
Role of modifier genes
and biomarkers in PXE
September 12, 2013
What is the mutated PXE-
associated protein doing (or not doing)
in the liver, and can we fix it?
May 15, 2013
PXE - Can Diet Help?
Searching for the ABCC6 Substrate
2012 PXE Research Update
From Gene to Function to Therapy
Genetics of PXE
Do Mice Have PXE,
and Why Study Them?
September 23, 2009