Clinical Trials

Clinical trials involving treatments for rare disease such as PXE are difficult to sponsor and maintain due to the lack of foreseeable gain on the part of the treatment developer. However, PXE International is currently working with multiple organizations to help develop a clinical trial on PXE.

For more general information see Clinical Trials: The Basics, and Are You Involved in Research? or visit the National Institutes of Health's clinical trials website.

The benefits of participant ownership and sharing of clinical trial data appear to outweigh the risks. Read more in Power to the People: Participant Ownership of Clinical Trial Data, by Sharon and Patrick Terry, published February 9, 2011 in Science Translational Medicine.
 

Primary Researchers

Lionel Bercovitch
Emily Chew
Qiujie Jiang
Ludovic Martin
Mark Lebwohl
 

Related Articles

Rongioletti F, Izakovic J, Romanelli P, Lanuti E, Miteva M. Pseudoxanthoma elasticum-like papillary dermal elastolysis: A large case series with clinicopathological correlation. J Am Acad Dermatol. 2011 Oct 21. [Epub ahead of print]

Uitto J, Bercovitch L, Terry SF, Terry PF. Pseudoxanthoma elasticum: Progress in diagnostics and research towards treatment : Summary of the 2010 PXE International Research Meeting. Am J Med Genet A. 2011 Jul;155(7):1517-26. doi: 10.1002/ajmg.a.34067. Epub 2011 Jun 10.

Lee TK, Forooghian F, Cukras C, Wong WT, Chew EY, Meyerle CB: Complementary angiographic and autofluorescence findings in pseudoxanthoma elasticum. Int Ophthalmol. 2008 Oct 15. [Epub ahead of print]

Bhatnagar P, Freund KB, Spaide RF, Klancnik JM Jr, Cooney MJ, Ho I, Fine HF, Yannuzzi LA: Intravitreal Bevacizumab for the management of choroidal neovascularization in pseudoxanthoma elasticum. Retina. 2007 Sep;27(7):897-902.