RPF and Mayo Clinic presenting new research
Next month the Rheumatoid Patient Foundation (RPF) will once more bring the voice of people with rheumatoid disease (PRD) to the American College of Rheumatology (ACR) Annual Scientific Meeting—this year in Atlanta, Georgia. The ACR meeting is the largest annual rheumatology meeting in the world. Between 10 and 15 thousand rheumatology practitioners attend the meeting, along with nurses, educational institutions, and industry (such as pharmaceutical and medical technology companies).
In collaboration with Mayo Clinic, RPF surveyed people with rheumatoid disease earlier this year. The data from over nine hundred PRD were used to create some of our research abstracts for this year’s ACR meeting. All four abstracts were accepted through the blind application process. While it’s exciting to present the research at ACR, the best part is what we are actually learning from studying the survey data!
These are novel ideas, being presented for the first time.
RPF Posters this year at ACR
Three of the abstracts are being developed into posters to be presented in Poster Sessions at the meeting:
RA Presents in Disease Patterns Impacting Treatment Response, by Kathryne Marks, Dana Symons, Cynthia Crowson, Pamela Sinicrope and Kelly O'Neill. Click here to view Abstract #473 on the ACR website.
“It Felt Like I Was Walking on Rocks” Patients Share First Symptoms of RA by Pamela Sinicrope, Dana Symons, Ahmad P. Tafti, Christi Patten, Martha Bock, Jon Tilburt, Cynthia Crowson, Elena Myasoedova, John Davis and Kelly O'Neill. Click here to view Abstract #492 on the ACR website.
Deep Learning Social Media Analysis Demonstrated Gender-Specific Disparity in Side Effects from Rheumatoid Medications, unrelated to the survey but initiated by a Mayo partner. Click here to view Abstract #1159 on the ACR website.
Oral presentation of data
One of this year’s RPF abstracts was accepted as an Oral Presentation instead of a poster, which will be given by RPF founder Kelly O'Neill:
Importance of Discussing RA Treatment Goals: Patients Report Providers Seldom Discuss Treatment Goals and Outcomes Improve When Goals Are Discussed by Kelly O'Neill, Cynthia Crowson, Dana Symons, Pamela Sinicrope, Elena Myasoedova, Martha Bock, Jon Tilburt and John Davis. Click here to view Abstract #2767 on the ACR website.
Over the next few weeks, we’ll able to share more about this research and its presentation at ACR. We’ll bring you the full report—including pictures! After the meeting, we’ll even publish the actual posters here on rheum4us.org. Please stay tuned!
RPF Exhibit with free materials for rheumatologists
While groundbreaking research is exciting, the highlight of our presence at the ACR meeting is always our exhibit “booth.” This is where rheumatologists take time to talk one-on-one with patients and caregivers. Doctors have been very responsive and enthusiastic about good materials to support better communication with patients.
Again this year, we’ll have educational materials available that we mail to support rheumatology practices around the world. This year, we add a new wall poster about Rheumatoid Disease, explaining some of the basic ways RD can affect the body. This pairs beautifully with last year’s Treat to Target poster, both designed by our volunteer graphic designer, Dana Symons.
If you are interested, you can always purchase these posters for your favorite rheumatology practice. Click here to view options.
WHY DOES RPF SPEND RESOURCES ON THE ACR MEETING?
Interacting with rheumatologists and investigators at ACR gives people with RD a voice they would not otherwise have. RPF has seen the impact of these peer-level interactions over the years.
IS OUR INFORMATION SECURE IF WE ANSWERED THE SURVEY?
Yes! The secure survey platform separates the internet address (identity) of the respondents from their answers—so we never know whose answers are whose.
WHY ARE THERE ONLY 907 SURVEY RESPONSES?
Some respondents did not answer certain required questions, so their answers were not included in the data being presented at the meeting.
IS THIS THE FIRST TIME RPF HAS PRESENTED RESEARCH ABOUT PATIENTS?
No! Click here to view some previous posters presented by RPF at ACR.
WHEN IS THE NEXT OPPORTUNITY TO PARTICIPATE IN RESEARCH?
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Thanks to our Sponsor, Scipher Medicine!
RPF would like to thank our sponsor, Scipher Medicine, for helping to cover the costs to attend this year's ACR Annual Meeting. We are grateful for their support of our mission and the work that they are also doing to improve the lives of people with RD.
Scipher MedicineTM holds a fundamental conviction that patients with autoimmune diseases deserve a simple answer to their treatment options using scientifically-backed data. The company’s mission is to get patients the right drug from day one by developing tests that predict non-response to targeted therapies, starting with rheumatoid arthritis. Scipher’s PrismRATM is a simple blood test, currently in a clinical trial, that identifies patients who won’t respond to anti-TNFs before starting their first biologic therapy, potentially giving these patients access to alternative approved targeted therapies sooner. Many RA patients take anti-TNF therapies, yet most of them do not respond adequately. Scipher is determined to find these patients and get them the right drug from day one. To learn more, visit www.sciphermedicine.com.