This past March, CreakyJoints and the Arthritis National Research Foundation (ANRF) hosted an online conversation where arthritis patients from across the nation were asked what they thought researchers should study.
It was a lively discussion with the arthritis patients identifying three broad areas of interest:
1. Causes of inflammatory arthritis
- What are the genetic and environmental triggers that cause someone to get rheumatoid arthritis (RA)?
2. Long-term effects of arthritis and medications
- What’s the impact on fertility and pregnancy?
3. Quality of life and disease management
- What’s the ideal balance between “pushing” and taking care of oneself?
A rheumatologist I shared these patient study suggestions with was not surprised. These questions, she told me, make total sense as they were the ones rheumatologists are asked about all the time in clinical practice.
The online conversation—CreakyJoints’ third in a series of scheduled Twitter chats—recognizes that what’s been missing in arthritis research is having the patient in the discussion. We are very excited to be involved with a research effort that puts the patient front and center. We believe that what has been missing in rheumatology research is asking people who actually have arthritis about their issues and concerns, and what they think should be studied. Instead, research has been driven by scientists who generally do not have arthritis.
We believe by joining forces with research organizations such as ANRF and Consortium of Rheumatology Researchers of North America (Corrona), that CreakyJoints will not only work to improve patient-doctor communication but help advance research and improve the care of patients with rheumatic diseases.
We hope you think so too and will join the effort.
Please let us know what you think researchers should study by contacting me via the link below. Research is a hunt for the truth. The first step is sharing your truth about arthritis.