Patient voices are critical to finding a cure for OA and other forms of arthritis. That’s the message Arthritis Foundation Osteoarthritis (OA) Programs Director Angie Botto-van Bemden, PhD, is sharing at the2019 annual European Congress of Rheumatology (EULAR)in Madrid, June 12-15.
More than 16,000 delegates from around the world are expected to attend. Her message is more important than ever because many organizations and regulators are already shifting to approval of research programs and medicines only if patients have been included in the design of trials and the development of new treatments to help determine benefit versus risk ratios.
“People with OA should be able to influence the direction of research that have a direct impact on their well-being and on their lives,” explains Dr. Botto-van Bemden. “The biggest challenge for patient research partners, as well as for researchers, is to engage in dialogue and create sustainable partnerships that assure adequate access to the unique knowledge from patients’ experience. Our goal is to incorporate the patient’s voice to create effective patient partnerships.”
In addition to meeting with many key global OA research partners, Dr. Botto-van Bemden will present the results of theGlobal Osteoarthritis Patient Perception Survey (GOAPPS) -首个全球同类调查，直接比较不同语言和文化的OA患者在同一调查中的生活质量(QoL)。参与调查的1500多名来自英语、西班牙语和意大利语国家的关节炎患者隶属于关节炎基金会。她还将展示全球OA管理从膝关节骨性关节炎患者的生活质量评估开始的结果:一项系统综述研究，报告了膝关节骨性关节炎患者的生活质量结果，并证实了特定的个体因素，如性别、体重、运动、心理健康和教育，可以影响膝关节骨性关节炎患者的生活质量和治疗结果。
The Arthritis Foundation is one of the largest nonprofit arthritis advocacy and research organizations in the world, fighting for patient voices to be heard. We are also a listening organization. From the Foundation’s 2017OA Patient-Focused Drug Development meetingand resultingVoice of the Patient reportto our morerecent global effortsto understand what patients think is most important to OA management, we continue to listen and represent patients. The Arthritis Foundation collaborates with manyOA patient advocacy organizationsworldwide to improve management of the disease in a way most meaningful to patients.