“Preventing Rheumatoid Arthritis (Pre-RA): perspectives of people with RA, people at risk and of rheumatologists” study
A research study funded by the Canadian Rheumatology Association’s Initiative for Outcomes in Rheumatology cAre (CIORA) wants to understand the perspectives of people with RA, those at risk of RA and health care providers about potential treatments aimed at preventing rheumatoid arthritis. Arthritis Consumer Experts is a partner organization on the project.
- Aged over 18?
- Someone with rheumatoid arthritis OR you have a first degree relative (parent, sibling, adult child) with rheumatoid arthritis?
- Someone with access to a computer and the internet?
Join the study as a patient with RA: https://surveys.core.ubc.ca/PreRA_RAs/login.html
Join the study as a first-degree relative: https://surveys.core.ubc.ca/PreRA_FDRs/login.html
JointHealth™ insight – Summer 2017
It’s summertime: What’s hot in arthritis research?
In this summer issue of JointHealth™ insight, we report on new information presented at the European League Against Rheumatism (EULAR) Annual Congress, which took place in Madrid, Spain, in June 2017. EULAR updates covered include:
- EULAR’s “Don’t Delay, Connect Today” campaign to improve models of care for inflammatory arthritis
- Immunogenicity studies that show comparable results between biosimilars and originator biologics
- Research from Denmark finds no higher patient use of health services after policy transition to biosimilars
- A best practice spotlight on helping patients understand biosimilars
In this issue, you will also find:
- Information about a new Osteoarthritis (OA) Tool for family physicians
- A profile of a young scientist’s research journey looking at osteoarthritis and biomarkers
What’s hot in arthritis research?
What is ROAR?
With rapid changes in access to health care information and health technologies, managing your chronic disease is becoming more collaborative and patient-centred. The ROAR public forum features a group of researchers from Arthritis Research Canada who are at the forefront of these changes. They will share what the latest research, developed in collaboration with patients, is telling us about arthritis care and self-management. Updates on current research will be presented in a relaxed and informative series of talks for people with arthritis and those who care for them. Bring your questions, as this is an interactive forum.
When? Saturday, October 21st, 2017 – 9:30am-12:30pm (PDT)
Where? Live online webcast or in-person at the Vancouver Public Library Central Branch, Alice MacKay Room, 350 West Georgia St, V6B 6B1
Cost: Live webcast: Free | In-person: $5.00
Register: Click here for the online registration form or call 604-207-0400 and toll free 1-855-207-0400
Speakers and Topics Continue reading
Patient engagement is encouraged from the moment the patient steps into their doctor’s office and has been demonstrated to improve the patient’s overall health outcome. In recent years, the term “patient engagement” has emerged in health research and knowledge translation. A study published in the Journal of Participatory Medicine reports on a research knowledge translation event, titled eROAR2013 (Reaching Out with Arthritis Research), led by members of the Arthritis Patient Advisory Board of Arthritis Research Canada. Using a case study approach, study authors describe the planning and the event itself, report on the challenges encountered, and note reflections and solutions that are pertinent for sustaining patient-research collaborative practices.
Definition of patient engagement
According to the study, patient engagement in research varies from minimal involvement to more participatory collaboration, and is broadly understood to occur when patients meaningfully and actively collaborate at any stage of the research process, from setting the research agenda to designing the research project, collecting data, and disseminating results. The foundation of patient engagement in health research is based on:
- the motto “Nothing About Us Without Us” from Charlton J.’s study “Nothing about Us, Without Us: The Dialectics of Disability Oppression and Empowerment”
- encouraging citizen empowerment through participation and wider societal developments
- activating “patient as partners” to create patient-centred care and promote shared decision making
- meeting current research values and ethical concepts such as mutual respect
The history of the Arthritis Patient Advisory Board (APAB)
The Arthritis Patient Advisory Board (APAB), formerly known as the Consumer Advisory Board (CAB), is comprised of volunteer advocates with arthritis who bring personal experience and arthritis knowledge to research decision making at Arthritis Research Canada (ARC). Their goal is to ensure the patient perspective is represented on research matters related to prevention, treatment and self-management of arthritis. Individually and collectively, they communicate research information and findings to arthritis patients, professional organizations and the general public.
Their mission is “to participate in all components and phases of arthritis research, and serve as a bridge between researchers, people with arthritis, and the community at large.” Since 2006, APAB members have organized annual knowledge translation events called Reaching Out with Arthritis Research in Vancouver, Canada. Each interactive event includes presentations from patients, researchers and health professionals. Topics covered include practical disease management information, best practices in prevention and management of arthritis and case studies from current research.
Planning and Preparation
Image courtesy of digital art at FreeDigitalPhotos.net
According to findings from a recent study, poor patient-provider communication and care coordination result in increased damage in patients with systemic lupus erythematosus (SLE). If you would like to learn more about how to best communicate with your rheumatologist and physician, please visit JointHealth™ Education and take Lesson 1: The Art of communicating with your rheumatologist.
The research, titled “Relationship Between Process of Care and a Subsequent Increase in Damage in Systemic Lupus Erythematosus” was published in Arthritis Care & Research. The team wanted to understand how data from the Lupus Outcome Study could be used to evaluate healthcare interactions and subsequent accumulation of damage by the disease over two years.
According to the Centers for Disease Control, women are more likely to develop osteoarthritis (OA) than men. Even though osteoarthritis is the most common form of arthritis, scientists have not been able to find the reasons for this unequal trend.
A team of arthritis researchers from Augusta University (Kolhe et al.) have found new knowledge that can help explain why women may be at more risk for OA than men. The researchers looked at the “exosomes” (cellular packages filled with different substances our cells release to aid with cell communication) released in both male and female patients with OA.
The exosomes the researchers were concerned with were the ones that held microRNAs (miRNAs). miRNAs are short segments of RNA (a template in all cells that helps to transmit DNA instructions) that help to regulate how our body expresses the genes held in our DNA.
The results found that the miRNAs found in the exosomes studied behaved very differently in men and women. The differences lie in female miRNAs that have to do with collagen production and estrogen signaling; the female miRNAs were altered and deactivated more often than male miRNAs.
This difference led the researchers to look at estrogen’s role in OA. What they found was that when estrogen levels dropped, there was an increase in the number of cells that break down bones. This correlation is important because when women enter menopause their estrogen levels drop possibly resulting in an increased susceptibility to OA and possibly explaining why women have OA more often than men.
The team’s research into exosomes, microRNAs, and estrogen’s role in osteoarthritis provides important new insights into why women may be more at risk for developing osteoarthritis than men. For more information on osteoarthritis and treatment solutions visit Arthritis Consumer Expert’s spotlight on osteoarthritis.