Long-Term Follow-Up Study

Questions for the PXE Community!

SBT's picture

Hi everyone! My name is Sophie. A couple months ago I posted this idea (https://mosaic.ucsf.edu/pxe-research/lab/idea/86) to PXE Lab -- and I got great feedback in the comments! This and other ideas have since grown into the Long-Term Follow-Up Study premise, and I'm so excited to get started.

This study is exciting and overdue (in my opinion!) because no longitudinal studies (that I know of -- please correct me if I'm wrong) have been conducted on the long-term effects of nutrition and physical activity on PXE symptoms. We hope that the results of this long-term study will elucidate links between diet/exercise patterns and one or more aspects of PXE progression. Ultimately, we hope that the results of this and further studies can be used to help PXE patients slow down disease progression by making specific lifestyle adjustments.

It would be amazing if you all would give us any general feedback that's on your mind, and also feedback regarding the following:

-What would be an efficient protocol? I'm thinking the easiest way would be to choose a subset of PXE and Life questions related to diet and exercise (we can use these as a starting point and then add external questions to this set), and have each study participant answer these questions once a year, every year, for X number of years. In addition to this, we can arrange to check each participant's blood pressure, BMI, and other health characteristics once a year. What do you all think?

-For how many years do you think we should track each participant in the study? 5, 10, etc.? And why?

-For those of you who have taken the PXE & Life survey, which questions or categories of questions would you suggest using as part of this study? And for anyone -- whether you have taken the survey or not -- do you have any particular questions in mind that you would like to see addressed?

Please share any and all feedback you have. And please take the PXE & Life Survey if you haven't already (http://pxe.org/pxe-registry)! Thank you so much!!

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Stacey Mokalis's picture

PXE sufferers exist  in  all parts  of  the  world  so  maybe  we  could  get  info  on  different  diets  and  connect  it  to  the  progress of  PXE?

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