Episode 5 Patient Registries with Kaleb Michaud

Welcome to AiArthritis Voices 360. This episode, your hosts Tiffany and Kaleb Michaud from FORWARD Databank, 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. 

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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.

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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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Show Notes: Episode 5 – “Patient Registries with Kaleb Michaud”

 

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 - IFAA 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 - IFAA 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 - IFAA wants 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