Wednesday, 12 August 2022

Want to Help Medical Research?

I've heard about a couple of studies that lupies may possibly be interested in helping with.

Firstly a local one (well, Brisbane, which is close to local).

Medical Photographer Kara Burns at the Queensland University of Technology is doing a study on medical selfies, and how taking photos of rashes, moles and other oddities could help with patients medical treatment.

If you have an interesting rash to share, Kara would love to hear from you.

You can find out more about her research here: http://www.abc.net.au/news/2015-08-12/could-a-medical-selfie-save-your-life/6691832 

If you  are interested in being part of her study, her email is kara.burns@hdr.qut.edu.au.



The other is a study taking place in the USA to test a new lupus nephritis drug.

Chris Lovelace from The Patient Recruiting Agency said:

Aurinia Pharmaceuticals Inc. is developing Voclosporin, an immunosuppressant, for the treatment of lupus nephritis, and is conducting this study to demonstrate its efficacy and safety when taken orally twice daily when compared to placebo.  The study will last about twelve months and consist of about 13 visits to the study clinic during that time.


Volunteers who participate may or may not benefit from taking the study drug, but will be contributing to research that may well help those suffering from lupus nephritis in the future. Also, they will have more tests and clinic assessments through the study than they would normally have in the course of their treatment, which may allow their own doctors to more thoroughly assess their condition.  As I’ve seen you note in your blog, the costs associated with chronic disease management can be dangerously burdensome, so this may be a way for some patients to receive more attention than they would otherwise have.

If you are interested in taking part, you can find further information at:  https://www.yourlupusstudy.com/.

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