In this study, ten patients with Rheumatoid Arthritis (RA) completed 8 hours of training on evidence-based medicine and guideline development and formed a patient panel to apply the Grading of Recommendations, Assessment, Development and Evaluation (GRADE) methodology to formulate recommendations for a survey containing clinical questions created by a physician-dominated panel. Fraenkel et al. reports that patients and physicians developed the same recommendations for most questions and that additional experiences are necessary to determine panel composition for future guidelines.
Research for patients, by patients.
A Creakyjoints initiative.
PatientSpot registry infrastructure was funded through a Patient-Centered Outcomes Research Institute Award (PCORI Contract Number PPRN-1306-04811). PatientSpot (formerly known as Arthritis Power) was jointly developed by the nonprofit Global Healthy Living Foundation (GHLF), its associated CreakyJoints arthritis patient community, and rheumatology researchers at the University of Alabama at Birmingham (UAB). We reserve the right to change and add sponsors and partner organizations and we also reserve the right to change placement of text on the page. Created by CreakyJoints® patient community in collaboration with patient advocates at Global Healthy Living Foundation (GHLF) and researchers at the University of Alabama at Birmingham (UAB), Arthritis Power (now PatientSpot)’s past participation in PCORnet®, the National Patient-Centered Clinical Research Network, was supported through multiyear, multimillion-dollar Patient-Centered Outcomes Research Institute funding awards [PPRN-1306-04811]. Global Healthy Living Foundation (GHLF), the parent organization of PatientSpot, receives grants, sponsorships and contracts from pharmaceutical manufacturers and private foundations. A full list of GHLF funders is publicly available here: https://www.ghlf.org/our-partners.
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