Research FAQ

Frequently Asked Questions - Research

1. What research is being done on PXE?
2. How can PXEers participate in research? 
    

1.  What research is being done on PXE?

The last few years have been very exciting for PXE Research with the development of the genetic test, the determination that PXE IS a metabolic disease, and the progression of the studies in the mouse model. Visit the Research section of the website to find summaries and relevant publications for the various focuses of our research, reviews of the major conferences in PXE history, profiles on PXE researchers, and more. [April 2009]

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2.  How can PXEers participate in research?

While we are not currently collecting blood for the Blood and Tissue Bank, we are always collecting clinical information for our studies on the progression of PXE. In the upcoming months, PXE International will be conducting a new epidemiological study. The purpose of this study is to update old information, gather new information, and use those findings to further PXE Research and our understanding of the condition. We are asking PXEers worldwide to be a part of this study by filling out a survey. [April 2009]

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Disclaimer
These are replies to general and specific questions which have been submitted to us in the past. Our responses may not apply to any particular individual´s situation and are not a substitute for medical advice given by a physician who is familiar with the individual´s case and who has examined the patient. In addition, the responses are updated on a periodic basis but may not be current.