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Navigating Your Own Health - Focus on Registries/Databanks

AiArthritis Voices 360 Full Episode #5

Air Date: December 15, 2019

This episode, your host Tiffany and her co-host, Kaleb Michaud, as they tune in from the American College of Rheumatology (ACR) meeting to discuss the importance of navigating your own health journey as a patient by having a voice in activities such as databanks and registries. FORWARD, and the associated projects mentioned, will not only help patients become more active in managing their own healthcare, the patient contributions will also benefit the advancement of science and the understanding of rheumatology. 


They also introduce listeners to our organization's project seeking to make big changes: ACT II! The data from this project, which aims to identify "Typical Atypicals" (patient subgroups) and associated therapeutic response issues, will be housed inside a new AiArthritis databank that will be developed and stored by FORWARD.


LISTEN TO THE EPISODE THEN BE SURE TO TAKE A SEAT AT THE TABLE BY JOINING THE CONVERSATION! 

(Scroll down the page to learn how!)

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Now it's YOUR TURN to join the conversation!

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What do you think about this episode?

We want to know what you think! By continuing the conversation with your opinions and perspectives - we all get a better understanding of the problems facing our community.  Better yet, through these conversations we can start working and developing solutions.


We mean it when say 360. Not only do we want your input anytime and anywhere, but we also are eager to see where the conversation will take us. So please, "pull up a seat at the table" and let's start talking!


Email us at podcast@aiarthritis.org, message us on social media (find us by searching for @IFAiArthritis)

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Continue the conversation in our own AiArthritis Voices 360 Talk Show Group!

Pull up a seat and join the conversation on the topic from today and past episodes. You may even get an opportunity to talk directly with the co-hosts and any episode guests!

The AiArthritis Voices Program

Our AiArthritis Voices 360 Talk Show is just a piece of larger program - the AiArthritis Voices Program.


AiArthritis Voices is our 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.


If you want to get more involved, and see more of the opportunities we have for you (and all stakeholders) please check out the AiArthritis Voices Program. Unite with others around the world to talk, learn, and connect. 

Join AiArthritis Voices
Show Notes:
00:52 – Tiffany welcomes listeners
1:20 – Co-host Kaleb Michaud introduces himself as an associate professor at the University of Nebraska Medial School and co-director of Forward, The National Databank for Rheumatic Diseases and as a patient with Juvenile Rheumatoid Arthritis
03:17 - Kaleb presented at the American Conference for Rheumatology about International Registries for Rheumatology
04:10 - Forward is a patient-driven registry based on detailed survey responses collected from patient participants
08:53 - The Forward wants you to participate, whether you are doing really well or really poorly or anything in between
09:43 - Registries monitor patient journeys to benefit scientific understanding of rheumatic diseases
10:41 - Kaleb explains his decision to become a medical researcher 
11:57 - Tracking patient symptoms over time can lead to more accurate diagnosis and treatment because patients may not be aware of incremental progression 
13:38 - Long questionnaires encourage patients to thoroughly interrogate their own health and reflect on how they are doing
14:34 - One patient, Mary Felstiner, wrote a book titled Out of Joint about the experience of completing the questionnaires.   
17:10 - People who participate in registry studies statistically live longer than patients who choose not to participate.  
18:04 - Our organization is creating our own databank, A Community Team (ACT). We are currently working on the second phase of the project, dubbed ACT II. For more information visit www.aiarthritis.org/ACTII
19:05 - Tiffany invites listeners to check out www.aiarthritis.org/aiarthritis-voices, the sister site of the Voices 360 Podcast, where you can contribute your ideas for ACT II as well as all of our episodes! 
20:12 - Our organization and FORWARD are also using the new AiArthritisVoices.org platform - and associated databank - to focus on patients who are diagnosed with Undifferentiated Disease, or struggling to get a diagnosis, so they can track onset symptoms in real time
21:00 - Tiffany invites listeners to connect anyone who is struggling to be diagnosed with the site
21:10 - Kaleb points out that all the patient responses to questionnaires are read by members of the team, and all information is used
22:30 - Kaleb invites people to visit www.forwarddatabank.org/ to get involved with Forward
22:45 - Listeners can email Kaleb directly with questions at kaleb@ndb.org
22:53 - Tiffany thanks listeners and Kaleb for joining her for this episode
23:02 - We want to hear from you if you have been very involved in managing your own healthcare
23:10 - If you have feedback about the registry experience, we would love to hear from you as well
23:30 - Visit www.aiarthritis.org/podcast to get involved

Your Co-Hosts & Guests: Who is at the table this episode?

Kaleb Michaud, PhD 

FORWARD: National Data Bank for Rheumatic Diseases, Co-Director 

Associate Professor at University of Nebraska Medical Center

Juvenile Idiopathic Arthritis


Dr. Kaleb Michaud is the Associate Professor, University of Nebraska Medical Center and Co-Director, FORWARD Databank (formerly known as the National Databank for Rheumatic Diseases), which is the largest long-term open-cohort observational study of its kind with over 50,000 patients enrolled since 1998. He was diagnosed with Juvenile Rheumatoid Arthritis, now called Juvenile Idiopathic Arthritis) at age three. He is proud to be a long term volunteer for the American College of Rheumatology / Association for Rheumatology Professionals, and helps with the Rheumatology Informatics System for Effectiveness (RISE) national registry. 


Kaleb's primary research interests revolve around pharmacoepidemiology, health outcomes, medical informatics, quality of life, and cost-effectiveness in rheumatology. Some of his current projects include: mortality in rheumatic diseases, cost-effectiveness of rheumatoid arthritis treatments, impact of collecting patient reported outcomes and passive data via smartphones. 


Starting in 2020 he - in association with FORWARD - will be collaborating with our organization to track persons currently diagnosed with a form of Undifferentiated Ai Arthritis Diseases or who are suspected of having one of our diseases but whom are currently undiagnosed. The data collected will be the first to track patients prior to and as they are diagnosed, recording "real time" early symptoms of our diseases.

Join FORWARD and AiArthritis Voices (online site) today!

AiArthritis Voices

AiArthritis Voices private online community is the space where our organization invites people living with our diseases to pull up a seat "at the table" and get involved with everything we do to impact education, advocacy, and research.  Participants can Talk, Learn, and Connect with many opportunities to have a voice.

Everything we do as a nonprofit is based on communication with our peers, who also live with our diseases. So join today and see how YOUR VOICE can impact the future for millions!

AiArthritis Voices 360 podcast topics will also be further discussed inside this online site.

FORWARD Databank

International, patient-driven based registry where those diagnosed with rheumatology conditions  can bi-annually contribute a high level of information that is important, but that could not be collected in a 15 minute doctor visit. 

Patients and stakeholders who use this registry are passionate about incorporating patient voices into real world data so, together, the lives of those affected can be improved. To do this, we all have to move FORWARD as a team!

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