I was curious... why doesn't this forum, as an arm of the SSF, prominently display or post the status of individual clinical trials related to Sjogrens?
In my opinion, as part of advocating for all of those battling AI disease... something like this should probably be displayed. Not only to give hope, but to show the progress of the proverbial football being moved down the field. I think it also helps by showing that we are actually interested and following pharmaceutical developments as a patient community... I can't tell that that sentiment really exist around here, or in most Rheumatology practices.
Something like Table-1 of this arcticle would be useful:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4916986/ (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4916986/)
I added a clinical trial list like that to my website (http://www.whatyousjo.com/treatments/sjogrens-syndrome-clinical-trial-listing/), though it's past due for an update. I added it because I also found it difficult to find a decent listing of SS trials; I would certainly appreciate if the SSF maintained something themselves.
Sjogren's World is a 501(c)(3) organization and has been since 2005.
Read more about the history of our organization here: https://sjogrensworld.org/index.php?board=38.0
As a private organization, Sjogren's World is not an arm of the SSF; we are not legally related to it in any way. Many of us are members of SSF on an individual basis.
Spring, President Sjogren's World
I agree it would be great to regularly get updates on advances.
I follow WhatYouSjo's blog and research independently.
I'm on Abatacept which the article mentions (phase III) and it really does help with
many SJS manifestations.
The information is available here
https://clinicaltrials.gov
(https://clinicaltrials.gov)
These are the known clinical trials for many conditions. This doesn't give the results. However, if a trial is concluded, you can look at the names of the folks who were running the trial, and search for articles with their name's.
Thank you all for sharing what you could... I think it would make for a very useful reference and show continued interest on our part.
Is there a POC here, or at the SSF that could be contacted to see if that's something they would be interested in doing for us?