Category Archives: Rheumatoid Arthritis

Developing the Rheumatology Learning Health System – A Patient’s Story

A big part of our Collaborating With Patients for Better Health scientific initiative has been creating the Rheumatology Learning Health System (RLHS) in collaboration with major partners. The goal of RLHS is to improve quality of care by enhancing communication between patients and their doctors through electronic dashboards.

These dashboards support meaningful conversations and shared decisions about care and treatment plans. They include patient-reported outcomes (PROs), enabling patients to list questions and concerns in advance of a clinical visit. Patients and doctors can turn on/off different data elements to focus on the most meaningful data.

During the pilot phase of this project, the group created and tested paper-based versions of the dashboard at three pediatric sites. In the next phase, electronic versions of the dashboards are being created, and adult sites are being added. Jennifer is helping us make this project successful.

Jennifer is a member of the Dartmouth-Hitchcock Adult Pilot Site Team. She was diagnosed with rheumatoid arthritis (RA) 10 years ago. While being treated with methotrexate, she started experiencing flares. Her doctor prescribed a short course of prednisone.

Reviewing the RLHS dashboard (like the one below) with her doctor helped them both see the visual of her joint count increasing in her RAPID3 scores. This led to her trying a new medication. Seeing Jennifer’s data at a point-in-time, and then over time, helped her and her doctor see how her RA disease activity needed a different treatment approach.

Jennifer says, “In the past, when thinking about a change in therapy, I’ve had some hesitation. It involves weighing how well I’m currently doing against things like possible side effects. What impact will the new medication have? Will I feel better? And equally important, what’s the added cost of a new medication?”

The dashboard helps focus conversations between patients and doctors. Asking patients like Jennifer the “Why” behind the reluctance or hesitation about changing medications invites a conversation about patient preferences and whatever extra help they may need.

“We’re trying to improve patient care by helping patients and doctors prepare for office visits, working together as a team, and improving communication between visits,” explains Arthritis

Foundation Senior Vice President Guy Eakin, PhD. “This is a difficult experiment, and exactly the type of challenge we’re proud to be working with patients and professionals to accomplish. We are thankful for the generosity of our donors for making this project possible.”

The Arthritis Foundation is working with the following partner organizations: Childhood Arthritis and Rheumatology Research Alliance (CARRA); the Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN); Understanding Childhood Arthritis Network – Canadian/Dutch Collaboration (UCAN, CAN-DU); and the American College of Rheumatology (ACR). The Dartmouth Institute for Health Policy & Clinical Practice facilitates the group by providing strategic oversight and support for the RLHS.

rheumatoid arthritis research

ELMO1 – More Than Just Your Friendly, Red Sesame Street Character!

Dr. Sanja Arandjelovic has been studying inflammation and arthritis for a while – specifically, how a gene called ELMO1 is related to arthritis symptoms in mice. In 2010, the Arthritis Foundation awarded Dr. Arandjelovic the Philip S. Maaram Esq. Research (Planned Giving) 3-year grant for a project that studied cell enzymes related to joint inflammation in rheumatoid arthritis (RA) in mice.

During this study, Dr. Arandjelovic worked with Dr. Kodi Ravichandran and his research team at the University of Virginia on a related project, examining the process of joint inflammation in RA. Their work may provide clues to why the pain flare-ups associated with RA occur – and lead to new treatments.

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acr 2018

Patients Report on the Final ACR Conference Sessions

More than 15,000 doctors, nurses, physical therapists, researchers, scientists and others with interest and/or expertise in rheumatology gathered in Chicago in late October for the American College of Rheumatology’s Annual Meeting. The Arthritis Foundation had a contingent of “patient representatives” attending to  provide the perspective and voice of people living with arthritis. They fanned out to attend sessions, view and present posters and collect information about exciting new developments in the field. Here are their notes from the final sessions of the meeting.

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acr 2018

Patient Perspectives at the American College of Rheumatology Conference

“Patient perspective,” “patient-reported outcomes” and “shared decision making” are hot topics at the American College of Rheumatology (ACR) 2018 Annual Meeting in Chicago. In fact, many patients – including some of the Arthritis Foundation’s patient representatives – are attending the four-day event, which highlights rheumatology developments and draws medical professionals and researchers from around the world.  

Donna Dernier, one of the Arthritis Foundation’s Patient Reps, reports that she ran into Hazel Breland, PhD, the incoming president of the Association of Rheumatology Health Professionals (AHRP), a division of the ACR. “She noticed my Patient Rep Sticker and stopped to say how glad she was to see patients involved with so many aspects of health care,” says Dernier.  

Besides attending the conference, patients are getting involved in many ways. Four patients affiliated with the Arthritis Foundation exhibited posters during the Patient Perspectives Poster session on Sunday.  

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Living Your Yes with RA Events 2017

2018 Living Your Yes With RA

Living Your Yes with RA is a personalized goal-setting event brought to you by the Arthritis Foundation. This free forum gives you the opportunity to learn ways that can help you say Yes more than No, despite the challenges of living with rheumatoid arthritis (RA). You’ll get expert advice from a local rheumatologist plus guidance on setting goals that can help you live life to the fullest. Let us help you manage your RA, as well as communicate effectively with your own doctor.
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spotlight on dr dougherty

Researchers on the Path to a Cure – Spotlight on Dr. Edward Doherty

Why is my immune system attacking my joints? What is the cause? If you have rheumatoid arthritis (RA), this is something you have probably wondered at some point. It’s something Dr. Edward Doherty has wondered as well, and is currently studying. Dr. Doherty and his co-investigator, Dr. Pathricia Tilstam are studying key cells that drive inflammation in their 2-year Arthritis Foundation-funded project, “MIF/CD74 signaling as a new candidate for immunotherapy of rheumatoid arthritis”. With autoimmune disorders like RA, something triggers the immune system to malfunction and attack healthy cells, causing inflammation and disease. Dr. Doherty and Dr. Tilstam are looking for some of the triggers to help develop more effective treatments to stop progression and joint destruction.

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obesity studies worsen inflammatory arthritis

Three New Studies Show How Extra Weight Worsens Inflammatory Arthritis

It’s no secret that obesity is associated with a higher risk of developing rheumatic diseases and worse outcomes. Three new studies, presented recently at the 2017 Annual Meeting of the American College of Rheumatology, characterize in greater detail the harmful effects of excess weight in people who have rheumatoid arthritis (RA) or axial spondyloarthropathy (axSpA).

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andrea avery

Andrea Avery: Composing My Life

Last week at the Conference of Champions, Andrea Avery, author and Arizona-based Foundation volunteer, shared her gripping story, intertwining her love for piano and the reality of her arthritis. Beyond sharing her personal story with hundreds of volunteers in Phoenix, she also met and performed with her inspiration, Byron Janis, master and renowned pianist. See below for an excerpt from her book, Sonata: A Memoir of Pain and the Piano.

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dr christine beeton

Researchers on the Path to a Cure – Spotlight on Dr. Christine Beeton

Venom can kill, but this research proves it could help do the opposite. More specifically, some chemicals found in venom could act as a treatment for disease. These chemicals come from a deadly reptile, but with the help of Dr. Christine Beeton, venom might be able to better the lives of multitudes of people.

Dr. Beeton and her research team are looking at the chemicals found in scorpion venom as a source of potential treatment for autoimmune diseases like rheumatoid arthritis (RA).

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dr c michael stein

Researchers on the Path to a Cure – Spotlight on Dr. C. Michael Stein

Every day, scientists work toward the advancement of rheumatoid arthritis (RA)treatment. And Dr. C. Michael Stein has made an exciting new discovery that could help these advancements along and predict how specific treatments will work.

Dr. Stein is looking at small molecules that have the potential to cause big problems.  His 5-year Arthritis Foundation-funded project, “Extracellular small RNAs in rheumatoid arthritis,” is looking at how small molecules of ribonucleic acid (RNA) in the blood may be markers for different diseases.

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