Changing the world with your knee - Investing in our future
AiArthritis Voices 360 Full Episode #9
Air Date: January 12, 2020
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.
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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.
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If doing for clinical purpose, like Deb had, it’s unavoidable, it had to be done. But in the case of research like this, it doesn’t HAVE to be done, so it’s voluntary to undergo the procedure. But the data that researchers can collect from studies like this can help patients in the future gain access to the right treatments at the right time. That will save patients from trial and error on treatments that are not so effective, which in turn can save money and improve outcomes.
If you are a person living with Rheumatoid Arthritis, or similar disease, we need to speak with you so our voices can help researchers. Interesting in joining some conversations with us on this topic? Then sign up for our list to get more involved with research and we'll be in touch soon!
Show Notes: Episode 9 – “Changing the world with your knee tissue - investing in our future”
00:51 – Tiffany and Deb welcome listeners to a touring episode recorded at the American College of Rheumatology Annual Meeting featuring rheumatologist and clinical researcher, Dr. Aurélie Najm
01:24 – Aurélie introduces herself
01:37 - She is researching providing tailored treatments to patients with rheumatoid arthritis
02:03 - Aurélie is the co-chair of the EULAR Synovitis Study Group, which is studying synovial tissue to determine the best treatment for each patient
03:20 - Cellular dysfunction in the synovial membrane causes synovitis (or inflammation of the synovial lining in joints)
06:10 - 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
09:36 - Deb discusses her experience with joint biopsy procedures
12:12 - The two methods available for obtaining synovial samples from joint spaces are arthroscopic or ultrasound guided biopsy
14:39 - Arthroscopic biopsy may be more precise due to the ability to visualize the inflammation when choosing a sample site
16:13 - Please consider providing input on what questions you have about synovial biopsies or participating in clinical research by visiting our website
18:20 - What would be the barriers and benefits to you as a patient participating in clinical research?
19:24 - Explaining the purpose of any procedure to the patient, especially when procedures are for clinical research and not necessity, is critically important.
20:52 - Volunteering for procedures to support clinical research is “an investment in the future.”
21:44 - Tiffany thanks Aurélie and listeners and invites everyone to visit www.aiarthritis.org/podcast to access resources and provide your thoughts on this topic
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.
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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Tiffany Westrich-Robertson
Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues. For the last several years, she has continued her education in research, including becoming a professional focus group moderator, and translated this experience at our organization to develop award-winning, innovative projects that are taking patient engagement to next levels.
Tiffany has served on several advisory boards, including those to advance patient voices in policy, clinical trials, and precision medicine. In addition to reviewing grants at PCORI and for the Department of Defense, she was the sole patient grant reviewer for the National Institute of Arthritis and Musculoskeletal and Skin diseases from 2015-2018. She currently participates as a Patient Research Partner for OMERACT (Outcome Measures in Rheumatology), co-leads our organizations' international effort to advance patient voices in rheumatology research (the ACTion Council) and has dedicated her professional career to developing other patients to utilize their voices to impact the future of millions.
Deb Constien
Deb has been living with Rheumatoid Arthritis for three decades and while she has experienced disability from it, she never lets her disease dominate how powerful her voice can be.
She has been a key Representative (high level volunteer) for our organization for several years and often takes a leadership role in many programs and mission initiatives, including attending meetings as the voice of the organization. She is also a Platinum Ambassador at the Arthritis Foundation, as well as various other nonprofits, and has formerly and currently used her voice as a Patient Research Partner (Wisconsin Research and Education Network (WREN), OMERACT, Arthritis Power through CreakyJoints and more). She has represented her state of Wisconsin on Capitol Hill and at a local multiples times, and most recently was a key player in helping to pass step therapy legislation in her state.
Guest Co-Host: Dr. Aurélie Najm, MD, MSc, PhD applicant
Dr. Aurélie Najm is a clinician scientist in Rheumatology. She has a major interest in the synovial tissue research field, and is currently the co-chair of the EUropean League Against Rheumatism (EULAR) synovitis study group. She has contributed to many projects aiming at developing the synovial biopsy techniques or the standardization of synovial tissue analysis in clinical practice and research, including the OMERACT (Outcome Measurements in Rheumatology) Synovial Tissue in Randomized Clinical Trials working group.
The possibility of designing patients tailored therapy based on many predictive features including tissue multidimensional analysis is among her main interests.
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