How you can help your Sjogren's community AND Primary Sjogren's research

General
1
Hi, All,
One of the sponsors of this Sjogren's online community has asked for our help. They are looking for a few community members, diagnosed with Primary Sjogren's in the past 3 years, for an at-home study. By responding to the study, you'll be helping support your Sjogren's online community AND help find a cure for Primary Sjogren's.
To participate in the study: https://sanguinebio.com/study?PSS001 or call 818-804- 2463.
To learn more about the non-profit that started your Sjogren's community: http://www.bensfriends.org
Feel free to leave any questions or comments below.
Warmest Wishes,
Your Loyal Mods
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That would be so great if something can be done about this deasease.

3

UPDATE - AUGUST 2016

We have heard from Sanguine that our amazing Sjogren's community has generated a large number of participants for this study, so much so they have come back to us to look for an additional 16 community members to take part in this at-home study.

If you have Primary Sjogren's diagnosed in the past 3 years, and haven't yet taken part then please take a look now. Your contribution could help find new treatments and cures for Sjogren's.

To participate in the study: https://sanguinebio.com/study?PSS001 or call 818-■■■■■■■■.

Help inform and shape the future treatment of Sjogren's Syndrome.

Warmest wishes

Ben Munoz and your Moderator/Moderator Support Team


To learn more about the non-profit that started your Sjogren's community: Ben's Friends

4

Thanks for sharing this! The link however doesn't work. I had to go https:sanguinebio.com/study and then click on "Learn More" under "Participant" to sign up for the study.

5

Thanks Meraux, I've just checked the link (which Sanguine provided) and it's worked fine for me and the broadcast link brings you to this discussion with the study links.

But if anyone else has problems with it let us know or follow Meraux's suggestion.

Thanks, JulesG

6

I have tried to participate in the study but when I tried to submit my data, I received the message - Try again. what am I doing wrong?

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I don't know, Gina. Could I suggest that you contact Sanguine. Here is the link to the contact page: https://sanguinebio.com/contact

9

I signed up. i did a lot of research on the company first, even though I knew that Ben's Friends checked them out before introducing them to us. It is purely questions and bloodwork. They do need to see your medical records from the doctor handling your SS. You can limit their access to only SS related info. You can stop at any time. If you chose to stop, you tell them if you just don't want to be contacted anymore and not to contact your doc again either OR you can do that and have them destroy any samples they still have that they took from you. They are essentially a "go between" trying to make the experience better for the patient so more people will come forward. They distribute the blood/tissue samples and related records (with no identifiers) to researchers and pharma. So far, I have found them to be very clear and detailed. I'll update if people are interested, as things progress. They did say i am eligible so we moved forward and signed the paperwork. They send someone to you to draw blood, btw. Hope this helps.