What Is a Plain Language Summary?
(See below for summaries. If you would like a summary done, please email sharon@pxe.org)
Scientific research is usually written for researchers and healthcare professionals, which can make it difficult for others to understand. Yet it is important for people affected by PXE to know what current research is showing and how it may contribute to the search for treatments.
Research is an effort to understand questions that are not yet fully answered. New findings can be important, but they must be interpreted carefully. Early results may be preliminary or may explain only part of the picture. Later studies may confirm, refine, or contradict them. Findings from animal studies may not apply to humans. Treatments that appear promising in preclinical studies or Phase 1 or Phase 2 trials may not advance to Phase 3 trials or ultimately prove effective.
It is also important to distinguish correlation from causation. Two things may occur at the same time without one causing the other. For example, people eat more ice cream in New York City during the summer, and crime also increases during the summer. This does not mean that eating ice cream causes crime. The two are correlated because both are associated with another factor: warmer weather. Research findings must therefore be evaluated carefully before conclusions are drawn.
These plain language summaries explain the findings of peer-reviewed research in clear, everyday language while remaining faithful to the original publication.
Each summary describes:
- The purpose of the study
- What the researchers did;
- What they found; and
- What the results may mean for people living with PXE, their families, clinicians, researchers, and others interested in the condition.
Technical terms are explained or replaced with more familiar language whenever possible.
These summaries are intended to make published research easier to understand. They do not replace the original scientific paper, medical advice, or discussions with healthcare professionals. Every effort has been made to represent the authors’ work accurately and to avoid drawing conclusions that are not supported by the research.
We are grateful to the volunteers who prepared these summaries. Each volunteer is named on the summary they produced.
Papers are sorted by topic. Always look at the publication date checking to see if there is a newer paper or this is old research.
Natural History - PXE characteristics and progression
Trouble Adjusting to Darkness May Be an Early Warning Sign of Vision Changes in PXE
Long-term Visual Outcomes in Pseudoxanthoma Elasticum-associated Choroidal Neovascularization
PROPXE Study - Dark Adaptation in PXEers
Developing pseudoxanthoma elasticum following a liver or kidney transplant
Treatment
Research on Potential Treatments - Animal Models
Can Citrate Help Prevent Calcium Buildup in PXE
The Power of People
How PXE International Helped Speed Up Research for Pseudoxanthoma Elasticum