Changing the world with your knee - Investing in our future
AiArthritis Voices 360 Episodio completo #9
Fecha de emisión: 12 de enero de 2020
Esta semana, acompáñennos en el podcast con Tiffany y Deb, quienes dan la bienvenida a la Dra. Aurélie Najm. La Dra. Najm es reumatóloga e investigadora clínica, y actualmente es copresidenta del Grupo de Estudio de Sinovitis de la Liga Europea contra el Reumatismo y miembro del grupo de trabajo de OMERACT (Mediciones de Resultados en Reumatología) sobre tejido sinovial en ensayos clínicos aleatorizados, en el que también participan Tiffany y Deb. Explica cómo sus equipos trabajan para recolectar y analizar muestras de tejido sinovial de pacientes con artritis reumatoide (AR) con el fin de desarrollar enfoques más precisos para el tratamiento de la enfermedad.
Deb y el Dr. Najm también discutirán la decisión de participar en biopsias de tejido desde la perspectiva del paciente y del investigador. especialmente cuando esa decisión es No por necesidad, sino para hacer avanzar la ciencia.
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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
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Tiffany Westrich-Robertson
Tiffany es la directora ejecutiva de la Fundación Internacional para AiArtritis y utiliza su experiencia profesional en mapas mentales y resolución de problemas para ayudar a otros, como ella, que viven con AiLas enfermedades artríticas actúan en conjunto para identificar y resolver problemas comunitarios pendientes. Durante los últimos años, ha continuado su formación en investigación, llegando a ser moderadora profesional de grupos focales, y ha aplicado esta experiencia en nuestra organización para desarrollar proyectos innovadores y galardonados que están llevando la participación de los pacientes a un nivel superior.
Tiffany ha formado parte de varios consejos asesores, incluidos aquellos que promueven la participación de los pacientes en políticas, ensayos clínicos y medicina de precisión. Además de evaluar subvenciones en PCORI y para el Departamento de Defensa, fue la única revisora de subvenciones de pacientes para el Instituto Nacional de Artritis y Enfermedades Musculoesqueléticas y de la Piel entre 2015 y 2018. Actualmente participa como socia de investigación de pacientes para OMERACT (Medidas de Resultados en Reumatología), codirige la iniciativa internacional de nuestra organización para promover la participación de los pacientes en la investigación reumatológica (el Consejo ACTion) y ha dedicado su carrera profesional a capacitar a otros pacientes para que utilicen su voz e influyan en el futuro de millones de personas.
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.
Coanfitrión invitado: Dra. Aurélie Najm, MD, MSc, solicitante de doctorado
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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