Help us build a better database to generate large scale statistics for the research community!
We are launching a crowdfunding campaign to build out a secure database for user data! More than that, we want to allow users to opt in to contribute anonymous statistical data that we could share with the autoimmune and scientific community. There really is a lack of awareness and large-scale statistics on the systemic aspects of Sjogren’s and other autoimmune conditions. Help us build a database that can generate more statistics on the various symptoms that affect our lives. Donate, like, or share: https://www.ifundwomen.com/projects/sjogrens-tracker-0
A lot of the studies I have been able to find are limited around 100 Sjogren's patients. Other population-based studies are limited by geographic regions or countries. The largest scale meta study I was able to find had a total count of about 1,000 Sjogren's patients. Sjogren's Tracker currently has around 3,600 users. I've already received questions like how many of our users experience fatigue, pain, or sinus issues. What if we built a database that would allow us to generate anonymous statistics like that. We would have potentially thousands reporting on their symptoms, and be able to generate large scale statistics and patterns on Sjogren's patients. We could then share that information with our users, physicians, research communities, and further raise awareness on how common and systemic Sjogren's is.
And there is no reason we should limit it to just Sjogren's. Many autoimmune patients have more than one autoimmune disease. We can collect anonymous information on various autoimmune conditions, their symptoms, and how one autoimmune condition maybe linked to another. Users who opt-in can also be connected to clinical researcher and test new treatment options. Let's create a channel where information can be shared more widely and anonymously among autoimmune patients!
Thank you so much for your help! Let’s continue to raise awareness and make autoimmune disorders a mainstream vocabulary. Let’s provide statistics that the medical/research communities cannot deny and make our varied and systemic symptoms common knowledge to those who treat us!