Tag Archives: CARRA

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.


Spring 2019 Childhood Research Grants Announced

We recently granted $232,357 to childhood arthritis research. Grants are funded through the Childhood 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 reading Spring 2019 Childhood Research Grants Announced

What’s Important to Juvenile Idiopathic Arthritis (JIA) Families: the JIA Voice of the Patient Report

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 reading What’s Important to Juvenile Idiopathic Arthritis (JIA) Families: the JIA Voice of the Patient Report

Our Rheumatology Learning Health System Is Starting to Attract Attention!

A big part of our Collaborating With Patients for Better Health scientific 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 reading Our Rheumatology Learning Health System Is Starting to Attract Attention!

Improving Mental Health for Kids With Juvenile Arthritis

Dr. Andrea Knight, lead investigator, will present “Engaging Patients and Parents to Improve Mental Health for Youth With Rheumatologic Disease” at the 13th International Congress on Systemic Lupus Erythematosus in San Francisco, April 5-8. The results of this study will also appear in the April 2019 issue of Lupus Science & Medicine. Continue reading Improving Mental Health for Kids With Juvenile Arthritis

CARRA study enrollment complete

New Large-scale Study to Make Personalized Medicine a Reality for Kids With JIA

Personalized treatments for children with arthritis will soon be a reality, thanks to a new research study supported by the Arthritis Foundation.

The study, the largest of its kind, is being done by the Childhood Arthritis and Rheumatology Research Alliance (CARRA), a North American research network that conducts collaborative research to find treatments and a cure for pediatric rheumatic diseases. The Arthritis Foundation has worked closely with CARRA since 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.

Continue reading New Large-scale Study to Make Personalized Medicine a Reality for Kids With JIA

juvenile idiopathic arthritis pfdd announcement

PARTNERS Pediatric Learning Health System: New JIA Project Focuses on Improving Outcomes for Children

The Patients, Advocates, and Rheumatology Teams Network for Research and Service (PARTNERS) consortium was selected to receive a 2-year grant to implement a Pediatric rheumatology Learning Health System (LHS) that will work with networks in the Patient-Centered Outcomes Research Institute (PCORI) PCORnet Learning Healthcare System Collaborative.

The PARTNERS Pediatric LHS will provide support for patients with juvenile idiopathic arthritis (JIA) and their families to actively engage in care and self-management activities. JIA is a rare disease, making it difficult to study. Currently there is no cure for JIA. Recent advances in drug development have resulted in many therapies, including biologics. However, there remain many unanswered questions about how to use available therapies. While early diagnosis and initiation of treatment have proven to improve outcomes, variation exists in treatment patterns across providers, medical centers, and geographic locations.

Continue reading PARTNERS Pediatric Learning Health System: New JIA Project Focuses on Improving Outcomes for Children

carra grants 2018

Spring 2018 Childhood Research Grants Announced

We recently gave approximately $160,000 toward childhood arthritis research in the form of research grants. The grants are funded through the Childhood Arthritis and Rheumatology Research Alliance (CARRA); small grants were given to pediatric rheumatologists and fellows small grant research awards were given to third year fellowship students.

Continue reading Spring 2018 Childhood Research Grants Announced

RLHS pilot program

Enhancing Communication Between Patients and Health Care Teams

Enhancing Communication Between Patients and Health Care Teams
Pilot Network to Launch Soon

The Arthritis Foundation is currently supporting the development and rollout of four specific scientific initiatives. These breakthrough initiatives are shaping the way new arthritis treatments are developed and will strengthen the relationship between you, your health care team.  One of these initiatives is dubbed “Collaborating With Patients for Better Health” and the central component to this project is the Rheumatology Learning Health System.

What is the Rheumatology Learning Health System (RLHS)? The RLHS is a process that builds better bridges of communication between doctors and their patients to improve health outcomes by providing a wholistic picture of a patient’s condition – from not only clinic visit data, but also data entered by patients in between clinic visits and complemented by available research data. It is the central piece of our Collaborating with Patients for Better Health science initiative. The RLHS will be enabled by a shared electronic platform that will provide the means for this patient-provider produced health record. The complexity of the project requires that it be tested at a small number of sites to ensure that it works as planned. It will allow for new ideas and concepts to be “incubated” and tested thoroughly before growing the RLHS.

This proof of concept pilot network project will test the RLHS at six sites – three pediatric and three adult sites. So far, three pediatric sites have been selected for this project: Hackensack Meridian Health in New Jersey, Stanford Health Care in California, and Wake Forest Baptist Health -Brenner Children’s Hospital in North Carolina. The adult patient sites will be selected soon. The pilot project will span two years (from February 2018 to February 2020).

The RLHS will securely house information from 3 different sources that will be available to participants through patient and health care provider coproduced dashboards:

  • Electronic patient health records maintained at individual medical practices: This contains information obtained during a medical visit, prescription information, and any patient test results ordered by a doctor
  • Information entered by patients themselves between visits with their doctors: These are known as patient reported outcomes, and includes information about general health, how a patient is feeling, how many joints are inflamed or painful, or side effects from medications
  • Existing arthritis patient registries: Databases of patient health information typically used for research

RLHS design features will include patient and health care provider decision support and shared decision-making tools, as well as features to support patient self-management.

The RLHS is being created through collaboration between the Arthritis Foundation, the 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 Dartmouth Institute for Health Policy & Clinical Practice.  Each participating organization has contributed to the co-design of this system and guides its path forward.

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