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CreakyJoints Publishes First Patient-Centered RA Guidelines
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CreakyJoints — an online, non-profit community for patients with rheumatoid arthritis, psoriasis, psoriatic arthritis and related conditions — has published the first patient-centered rheumatoid arthritis guidelines.
“What this guidance does for the first time is put into one document everything that is known about best practices for managing this disease across domains including prescription drugs, complementary and integrative medicine, diet and exercise,” Seth Ginsberg, president and cofounder of CreakyJoints, told Healio Rheumatology.
Ginsberg — also a voting member for the American College of Rheumatology guidelines — wanted to create an evidence-based guidance for everyone with rheumatoid arthritis and their family members.
“We ultimately decided to undertake this project, which was a massive year-long project, because we knew we had to help patients raise their voice with decision makers, whether that is the doctor or nurse, or the insurance company,” Ginsberg said.
Four medical reviewers — including three rheumatologists and one integrative medicine specialist — as well as a national patient council oversaw the guidelines, which underwent 17 draft versions. An update is already planned for the middle of 2017.
“For the first time, all of the information that the scientific and medical community knows about managing the disease can be found within one document, written specifically in lay terms and to be understood by patients and their families,” Ginsberg said.
The guidance — called “Raising the voice of patients: A patient’s guide to living with rheumatoid arthritis”— includes recommendations for disease management with prescription drugs, diet, exercise and complementary and integrative medicine, as well as tips learned from real patients in the “real world”, for how to overcome obstacles that patients are likely to face when obtaining insurance coverage.
“The most game-changing aspect of this document is that it lays out all of the options available to patients in order to manage their rheumatoid arthritis,” Ginsberg said. “I just hope everyone with the disease and their family has at least a chance to peruse it, because it is built for them.” – by Will Offit
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Disclosure: Ginsberg is an employee of CreakyJoints.