The Arthritis Foundation recently funded two new Childhood Arthritis and Rheumatology Research Alliance (CARRA) transdisciplinary research grants. Dr. Joyce Chang and Dr. Natoshia Cunningham have been awarded two years of funding for each of their projects.
OurCollaborating With Patients for Better Healthscience initiative has been gettingmore attention. The National Health Council (NHC) has asked Arthritis Foundation Senior Vice President Guy Eakin, PhD, to speak to members of the Science of Patient Engagement Symposium Planning Committee about the challenges of helping patients learn to communicate with their health care providers and become partners in the decision making process to achieve personalized care management.Continue readingPersonalized Care Management to Achieve Outcomes Important to Patients
Developing new treatments for kids with arthritis is challenging. Drugs that work for adults may not work the same way in children. Ask any pediatrician and they will remind you that kids are not just small adults. Children are still growing and developing. They are different sizes and at different stages of development, which makes dosing and safety considerations more challenging. The types of additional medical conditions children experience may be very different from the conditions seen in adults.Continue readingDeveloping New Treatments for Kids With Arthritis
A big part of ourCollaborating With Patients for Better Healthscientific 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.
Jennifer is a member of the Dartmouth-Hitchcock Adult Pilot Site Team. She was diagnosed withrheumatoid 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.
We recently granted $232,357 to childhood arthritis research. Grants are funded through theChildhood Arthritis and Rheumatology Research Alliance (CARRA). Small grants were given to pediatric rheumatologists and fellows; more awards were given to third-year fellowship students. The following projects have been funded from July 1, 2019, through June 30, 2020.Continue readingSpring 2019 Childhood Research Grants Announced
Arthritis patients have spoken: “We want safer, more effective, easier-to-use and less-painful-to-administer treatments that are less likely to cause potential long-term side effects. We need solutions to the challenges of dealing with comorbidities and multiple treatment changes.”Continue readingWhat’s Important to Juvenile Idiopathic Arthritis (JIA) Families: the JIA Voice of the Patient Report
A big part of ourCollaborating With Patients for Better Healthscientific initiative has been development of the Rheumatology Learning Health System (RLHS) in collaboration with some of our major partners. The goal of RLHS is to improve quality of care for pediatric and adult arthritis patients.
Continue readingOur Rheumatology Learning Health System Is Starting to Attract Attention!
The 15thannual scientific meeting of theChildhood Arthritis and Rheumatology Research Alliance(CARRA) opens today in Louisville, Kentucky.Continue readingCARRA 2019 Annual Scientific Meeting
Dr. Andrea Knight, lead investigator, will present“Engaging Patients and Parents to Improve Mental Health for Youth With Rheumatologic Disease”at the 13thInternational Congress on Systemic Lupus Erythematosus in San Francisco, April 5-8. The results of this study will also appear in the April 2019 issue ofLupus Science & Medicine.Continue readingImproving Mental Health for Kids With Juvenile Arthritis
Personalized treatments forchildren with arthritiswill soon be a reality, thanks to a new research study supported by the Arthritis Foundation.
这项研究是同类研究中规模最大的，由儿童关节炎和风湿病研究联盟(CARRA)完成，CARRA是一个北美研究网络，开展合作研究，寻找儿童风湿病的治疗方法。TheArthritis Foundation has worked closely with CARRAsince it was formed in 2002. Together, we’ve aligned our scientific agendas, and the Foundation has committed millions of dollars toward expanding juvenile arthritis research through CARRA.