Patients with Lupus share their health experiences within a secure registry to advance research, support better clinical decision-making, and improve patient outcomes
FRAMINGHAM, Mass., Nov. 6, 2023 /PRNewswire/ -- Alira Health, a global advisory and clinical research firm, and FORWARD, the National Databank for Rheumatic Diseases and largest patient-reported research databank for rheumatic disorders in the United States, announced today the launch of the enhanced Lupus Registry, enabling patients, caregivers, and research sponsors to gain better insights, and achieve better patient outcomes.
Lupus is a complex disease with diverse manifestation, limited treatment options and inequitable impact on the affected population. This makes research into patient experience, treatment patterns and long-term clinical outcomes particularly challenging. The registry will enable patients to securely and safely submit their health and symptom data, helping them to better manage their condition, and the de-identified data helps researchers design and drive new clinical studies to improve disease understanding, develop better treatments for Lupus and improve patient outcomes.
FORWARD has established a collaborative partnership with Alira Health for administration and expansion of the registry, along with data analysis and reporting. Alira Health will introduce innovative, streamlined data submission methods for patients via a mobile application known as Health Storylines™. The enhancement of this registry leverages technological advancements for an enhanced comprehension of Lupus. Patients will share their data through a structured registry questionnaire, and have the option to provide information about their day-to-day health experiences using the app and also to share their Electronic Health Records. This approach will enable researchers to gain more comprehensive insights into the real-life experiences of individuals living with Lupus.
Research sponsors will have the opportunity to accelerate and refine research by tapping into extensive longitudinal data and a robust recruitment channel for prospective studies (observational and interventional). This resource will enable them to explore new hypotheses and capture long-term outcomes. This approach empowers sponsors to assess the current disease burden and generate evidence on the impact of new and established treatments in a highly efficient way.
"Patient contributions to the registry will serve as a driving force for the exploration of novel approaches to Lupus treatment," said Kaleb Michaud, PhD, Director, FORWARD. "With a commitment to global patient data privacy, individuals can now confidently and securely share their data, enabling research sponsors to make profound discoveries in the field of Lupus, potentially leading to enhanced outcomes and new treatment options."
"We envision a future in which patients are empowered to personally manage their complete healthcare information, leading to more effective treatments, improved disease management, better overall health, and the ability to actively engage their support network," commented Jennifer Lannon, Director, Patient Engagement and Advocacy, Alira Health. "The collaboration with FORWARD and the Lupus Registry represents a significant stride along this transformative journey. We are privileged to work together in our shared mission to enhance the well-being of individuals living with Lupus."
FORWARD has engaged over 6,000 individuals with Lupus since their founding in 1998. Alira Health's Health Storylines has engaged over 3,000 individuals with Lupus since launching in 2013. As part of the partnership, these individuals will all be invited to participate in the enhanced Lupus Registry on Health Storylines.
The patient registry will serve as a continuous, worldwide digital repository for symptoms and health-related information. This data is shared directly through online and mobile applications. The system guarantees data protection and de-identification, preventing the direct association of specific data points with individual members. The data is managed and maintained by Alira Health in partnership with FORWARD to ensure data accuracy, hygiene, and quality.
The results of data reporting will be shared with the members of the patient registry, allowing patients to gain insights into the collective outcomes experienced by the population with Lupus. Furthermore, all research findings that are published will be disseminated to the Lupus Community, giving them the opportunity to understand the role of the registry in fostering groundbreaking discoveries.
About Alira Health
Alira Health is a global advisory and clinical research firm whose mission is to humanize healthcare and life sciences, in partnership with patients, through innovative technologies and expert guidance. From development to medical care, Alira Health complements the expertise of its Pharma, Biotech, MedTech and Patient Advocacy clients with a full spectrum of services across their entire solutions lifecycle. Learn more at AliraHealth.com.
About FORWARD
FORWARD is an independent, non-profit research organization, and one of the largest and longest running patient-reported research databanks for rheumatic conditions. FORWARD works with patients, physicians, researchers, and industry to collect, analyze, and share real-world data designed to advance knowledge about the causes, treatment, costs, and outcomes of rheumatic conditions. Learn more at ForwardDatabank.org.
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