The Global Healthy Living Foundation (GHLF) presented groundbreaking research at the 2024 American College of Rheumatology (ACR) Convergence in Washington DC, marking their ninth consecutive year and coinciding with PatientSpot’s 10th anniversary. This patient-powered research registry, formerly known as ArthritisPower, underscores GHLF’s commitment to improving care for individuals with chronic inflammatory diseases. This year’s presentations centered on enhancing care for conditions such as polymyalgia rheumatica (PMR), rheumatoid arthritis (RA), and psoriatic arthritis (PsA), while exploring the potential of emerging technologies to improve patient outcomes. This presentation also aligns with CreakyJoints® 25th anniversary, GHLF’s online community for arthritis patients and caregivers, further highlighting their long-term dedication to patient advocacy and research.
A significant portion of GHLF’s research at ACR focused on PMR treatment and addressing gaps in patient care. One study revealed a prevalent dependence on steroids for PMR and PMR with giant cell arteritis (GCA), often without supplementary therapies to mitigate steroids’ long-term side effects. This emphasizes the critical need for continued research into new therapeutics and the importance of clinical trials to explore more balanced and comprehensive treatment strategies. The ultimate goal is to reduce the reliance on steroids and improve the overall treatment experience for PMR patients.
Digital health innovations also played a prominent role in GHLF’s research. The multi-year WEAR study demonstrated how integrating Fitbit data with patient-reported outcomes enhances RA monitoring without increasing patient burden. This approach emphasizes personalized, patient-centered healthcare, where patient-reported data provides valuable insights for guiding treatment decisions and proactive disease management. Another study explored the feasibility of Remote Therapeutic Monitoring (RTM) for musculoskeletal diseases using the PatientSpot app. The positive feedback from both patients and staff suggests that RTM offers significant potential for improving patient engagement and providing continuous support between clinical appointments, facilitating proactive management and timely interventions.
GHLF also showcased research addressing the importance of infection prevention and managing comorbidities associated with chronic inflammatory diseases. These insights aim to support researchers, clinicians, and patients in maintaining disease stability and improving overall health through a holistic approach. In addition to scientific abstracts, GHLF presented patient posters at ACR Convergence, sharing real-world experiences from individuals living with these conditions. These perspectives offer valuable insights into the practical challenges of disease management and inform the development of more responsive, patient-centered research and treatment approaches. One such presentation focused on ChronicHue, a GHLF community supporting Black, Indigenous, and People of Color (BIPOC) individuals with chronic illnesses, addressing health disparities and promoting open health discussions within these communities. Another presentation highlighted the empowering role of self-directed research in personal health decisions, showcasing how a patient utilized systematic research methods to understand and manage their own symptoms. GHLF’s comprehensive research efforts, combined with patient-centered initiatives, demonstrate their commitment to improving the lives of individuals living with chronic illnesses.
Source link: http://www.businesswire.com/news/home/20241114949994/en/Global-Healthy-Living-Foundation-Brings-Innovative-and-Patient-Centered-Polymyalgia-Rheumatica-Psoriatic-and-Rheumatoid-Arthritis-Research-to-ACR-Convergence-2024
Jon Napitupulu is Director of Media Relations at The Clinical Trial Vanguard. Jon, a computer data scientist, focuses on the latest clinical trial industry news and trends.