Episode 9 Changing the world with your knee - investing in our future

This week join Tiffany and Deb as they welcome Dr. Aurélie Najm to the podcast. Dr. Najm is a rheumatologist and clinical researcher and currently serving as the co-chair for the European League Against Rheumatism’s Synovitis Study Group and part of the OMERACT (Outcome Measurements in Rheumatology) Synovial Tissue in Randomized Clinical Trials working group - which Tiffany and Deb also participate in.  She explains how her teams are working to collect and analyze synovial tissue samples from Rheumatoid Arthritis (RA) patients to develop more precise approaches to treating the disease. 

 

Deb and Dr. Najm will also discuss the decision to take part in tissue biopsies from the patient’s and researcher’s perspectives, especially when that decision is not based on necessity, but rather to advance science.

 

Would you undergo a knee biopsy to collect tissue so that the future of medicine can be more precise, and in turn, help doctors connect patients to the right treatments at the right time?IFAA is trying to help the researchers who do this type of work better understand what patients living with AiArthritis diseases may perceive as benefits and barriers to tissue donation. It's necessary to advance science, but it's also asking a patient to undergo a procedure that will cause some level of discomfort. But we need as many voices as possible to develop realistic recommendations. We need YOU!

 

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.

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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 9 – “Changing the world with your knee tissue - investing in our future”

 

00:51 – Tiffany welcomes listeners to a touring episode recorded at the American College of Rheumatology Annual Meeting featuring rheumatologist and clinical researcher, Dr. Aurélie Najm

02:10 - Tiffany is joined by patient co-host Deb Constein

02:44 – Aurélie introduces herself

02:57 - She is researching providing tailored treatments to patients with rheumatoid arthritis 

03:22 - Aurélie is the co-chair of the EULAR Synovitis Study Group, which is studying synovial tissue to determine the best treatment for each patient

05:10 - Cellular dysfunction in the synovial membrane causes synovitis (or inflammation of the synovial lining in joints)

07:30 - Patterns of inflammation within the synovial tissue can predict the future evolution of disease for that patient and which anti-rheumatic drugs may be more effective for that patient

10:56 - Deb discusses her experience with joint biopsy procedures

13:34 - The two methods available for obtaining synovial samples from joint spaces are  arthroscopic or ultrasound guided biopsy

15:58 - Arthroscopic biopsy may be more precise due to the ability to visualize the inflammation when choosing a sample site

17:31 - Please consider providing input on what questions you have about synovial biopsies or participating in clinical research by visiting our website

19:41 - What would be the barriers and benefits to you as a patient participating in clinical research?

20:44 - Explaining the purpose of any procedure to the patient, especially when procedures are for clinical research and not necessity, is critically important.

22:11 - Volunteering for procedures to support clinical research is “an investment in the future.”

23:00 - Tiffany invites everyone to visit www.aiarthritis.org/podcast to access resources and provide your thoughts on this topic

23:34 - Tiffany thanks Aurélie for her time

24:56 - Researchers need patients to participate in clinical trials to benefit the entire AiArthritis community

25:10 - IFAA seeks to help researchers develop the right protocols to recruit patient participants 

26:03 - Visit aiarthritis.org/podcast to learn how you can help