Author Topic: Status/Tracker for Sjogrens Clinical Trials by Phase  (Read 349 times)

markt

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Status/Tracker for Sjogrens Clinical Trials by Phase
« on: February 06, 2018, 10:18:36 AM »
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/

WhatYouSjo

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    • What You Sjo
Re: Status/Tracker for Sjogrens Clinical Trials by Phase
« Reply #1 on: February 06, 2018, 11:28:28 AM »
I added a clinical trial list like that to my website, 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.
Seronegative male diagnosed 2014. Using generic Plaquenil, Restasis, Xiidra, low-carb diet, moderate exercise, select supplements, helminthic therapy, & LDN. My treatment regimen

My website has posts on research and news.

Spring

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Re: Status/Tracker for Sjogrens Clinical Trials by Phase
« Reply #2 on: February 06, 2018, 06:06:29 PM »
Sjogren's World is a 501(c)(3) organization and has been since 2005.
Read more about the history of our organization here: http://sjogrensworld.org/forums/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

Sharon

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Re: Status/Tracker for Sjogrens Clinical Trials by Phase
« Reply #3 on: February 10, 2018, 04:31:01 PM »
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.
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

warmwaters

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Re: Status/Tracker for Sjogrens Clinical Trials by Phase
« Reply #4 on: February 11, 2018, 06:03:16 AM »
The information is available here
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.
Primary Sjogrens, dx June 2009, Immunoglobulin deficiency, axial spondylosis arthritis, IBS, autonomic neuropathy
Omeprazone DR 40 mg, mobic 15 mg, Plaquenil, LDN, B1, B6, B12, D, fludrocortisone, gralise, various inhalers

markt

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Re: Status/Tracker for Sjogrens Clinical Trials by Phase
« Reply #5 on: February 12, 2018, 05:59:14 AM »
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?