Newsletter – Summer 2022

Summer update

Arthritis lives with us through all seasons including summer and we hope you are taking the chance to rest, relax and enjoy a change of scenery. We have slowed down but we’re looking ahead and planning for Arthritis Awareness Month in September and responding to any pressing issues.

Read our newsletter to see what we have been up to, learn about opportunities to become involved, and stay informed about arthritis treatment and care!

What have we been up to?

CADTH patient input submissions – Together with Creaky Joints Canada and the Arthritis Society, we developed a patient input submission for belimumab (Benlysta) for lupus nephritis. We also expressed concerns regarding the recommendation for anifrolumab (Saphnelo) for Systemic Lupus Erythematosus.

Decision aid about medication tapering – We are pleased to share the Canadian Rheumatology Association’s Living Guidelines for the Pharmacological Management of Rheumatoid Arthritis with Disease-Modifying Anti-Rheumatic Drugs, as well as a supporting Patient Decision Tool. Two CAPA board members that live with RA were involved in developing the recommendation and patient decision aid.

Paient partner training program – We are very excited that we received many applications for our new patient partner research training program. We will be reaching out to candidates in August and hope to begin the training and mentoring program in September.

Paient partner experiences with the Chronic Pain Network – A group of patient partners of the Chronic Pain Network have put together an English and French video about their experiences with the Network and how people living with pain can work with research teams.

Get Involved!

Want to help rate flare management tools? Dr. Claire Barber at the University of Calgary is looking for adults with rheumatoid arthritis to rate the understandability and actionability of self-management resources using a simple assessment tool. Visit our website to learn more!

Arthritis Society community action grants – Have an idea to help people living with rheumatic disease in Canada? Check out these grant opportunities offered by the Arthritis Society to improve arthritis awareness or address a need in our community. We are happy to collaborate with individuals or groups and provide our support. Learn more about the grant opportunity and apply by August 31st!

Patient engagemnt in research modules – The Institute for Musculoskeletal Health has developed a number of self-guided educational modules to help patients or people with lived experience act as advisors in research projects. The modules are free and open to anyone to take anywhere and were co-created with patient partners.

Stay Informed!

Want to learn about research? CAPA and our community work regularly with researchers to advise on research projects. We developed a plain language summary section of our website so you can learn more about some of the research important to people with rheumatic diseases – learn more by visiting our website!

Take a Pain Check Foundation – CAPA collaborates with the arthritis community including Take a Pain Check Foundation which supports youth and young adults with rheumatic disease. They offer podcasts, blog posts, and a newsletter – subscribe to their newsletter today to stay informed!

Methotrexate tips for kids living with arthritis and their patients – We have developed a Methotrexate resource to help kids with arthritis based on a survey we did with the Irish Children’s Arthritis Network. The resource has been reviewed by rheumatology medical experts at SickKids (in Toronto) – check out the new resource on our website!

Lupus Ontario walk on August 20 – Our friends at Lupus Ontario are holding their Walk for Lupus on August 20 to raise money for research, clinics, education and programming. Register as an individual or team and walk for people with lupus in our community!