At The Table Episode 27: Your experience is key to unraveling the mysteries of COVID-19 - is your experience being counted?

In this week's mini-sode, Tiffany talks about the importance of being counted in research, especially in times when a new disease emerges and only a select few are truly being studied. This is the case with COVID-19, as most research emerging is based on studying people with confirmed positive results. However, due to lack of testing, false negatives (and positives), and other challenges associated with a disease in its' infancy, it's more important now than ever to ensure ALL people, perspectives, and experiences are counted. 

Our community is asking many questions about how COVID-19 affected our diseases. The only way researchers can gain enough data to fully answer these questions is if all our experiences are counted. So today we are asking you, if you are diagnosed with an AiArthritis disease and believe you were impacted by COVID-19 (whether you tested positive, or not), please participate in these rheumatology registries:

• COVID-19 Global Rheumatology Alliance. In addition to participating as a supporting organization, our leadership is also involved in the behind-the-scenes research committees as patient liaisons and patient surveys. International.  Participate now. 
• The Arthritis & Rheumatic Disease COVID-19 Project. This patient-powered study of the Autoimmune Research Collaborative will collect longitudinal data about autoimmune patient experiences with COVID-19 in the USA and Canada only. Sign up now. 
• FORWARD: National Data Bank. Participating will provide valuable information to health care providers going forward to help make decisions about how to treat patients with rheumatic diseases who get COVID-19. Participate now. 

 

Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!

 

If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.

 

JOIN TODAY!

 

AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).

 

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