Alira Health , a global clinical research and consulting company, and FORWARD , the national databank for rheumatic diseases and the largest patient-reported research databank for Rheumatic Disorders in the United States, announced the launch of the Enhanced Lupus Registry, enabling patients, caregivers and research sponsors to obtain better information and better patient outcomes.
Lupus is a complex disease with diverse manifestations, limited therapeutic options, and inequitable impact on the affected population. This makes it particularly difficult to conduct research on patient experiences, treatment patterns and long-term clinical outcomes. The registry will allow patients to securely submit data relating to their health and symptoms, which will help them better manage their disease. De-identified data will help researchers design and conduct new clinical studies to increase understanding of the disease, develop better treatments for lupus, and improve patient outcomes.
FORWARD has established a collaborative partnership with Alira Health for registry administration and expansion, as well as data analysis and reporting. Alira Health will introduce innovative and simplified data delivery methods for patients through a mobile application known as Health Storylines™. Improving this registry exploits technological advances for a better understanding of lupus. Patients will share their data through a structured registry questionnaire. They will have the ability to provide information about their daily health experiences using the app and also share their electronic medical records. This approach will allow researchers to obtain more comprehensive information about the real-world experiences of people with lupus.
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Sponsors will have the opportunity to accelerate and refine research by leveraging large longitudinal data and a robust recruitment channel for prospective studies (observational and interventional). This resource will allow them to explore new hypotheses and obtain long-term results. This approach allows sponsors to assess the current disease burden and produce data on the impact of new and established treatments in a highly efficient manner.
“Patient contributions to the registry will serve as a driving force for exploring new approaches to lupus treatment,” said Kaleb Michaud, PhD, director of FORWARD. “With a commitment to global patient data privacy, individuals can now confidently and securely share their data, enabling research sponsors to make important discoveries about lupus, which could lead to better results and new treatment options. »
“We envision a future in which patients will have the ability to manage all of their health information, enabling them to benefit from more effective treatments, better disease management, and better overall health. and the opportunity to actively engage their support network,” said Jennifer Lannon, Alira Health’s director of patient engagement and advocacy. “The collaboration with FORWARD and the Lupus Registry represents an important step in this transformation journey. We are privileged to work together on our shared mission to improve the well-being of people living with lupus. »
FORWARD has engaged more than 6,000 people with lupus since its inception in 1998. Alira Health‘s Health Storylines has engaged more than 3,000 people with lupus since its launch in 2013. As part of this partnership, these people will all invited to participate in the enhanced lupus registry on Health Storylines.
SOURCE: PRNewswire