- Alira Health and FORWARD Launch Enhanced Lupus Patient Registry Accelerating Solutions for Patients
- Lupus patients share their health experiences in a secure registry to advance research, support better clinical decision making, and improve patient outcomes
FRAMINGHAM, Mass., Nov. 7, 2023 /PRNewswire/ -- Alira Health, a global clinical research and advisory company, and FORWARD, the National Rheumatic Diseases Data Bank and the largest rheumatic disorders research database in The United States, today announced the launch of the enhanced Lupus Registry, enabling patients, caregivers and research funders to gain better knowledge and achieve better patient outcomes.
Lupus is a complex disease with diverse manifestations, limited treatment options, and an uneven impact on the affected population. Therefore, it is especially difficult to investigate patient experience, treatment regimens, and long-term clinical outcomes. The registry will allow patients to securely submit their health and symptom data, helping them better manage their disease, and the de-identified data will help researchers design and drive new clinical studies to improve understanding of the disease, develop better treatments for lupus and improve patient outcomes.
FORWARD has established a collaborative partnership with Alira Health for registry management and expansion, along with data analysis and reporting. Alira Health will introduce innovative and simplified data submission methods for patients through a mobile application known as Health Storylines™. Improving this registry takes advantage of technological advances for a better understanding of lupus. Patients will share their data through a structured check-in questionnaire and will have the option to provide information about their daily healthcare experiences using the app and also share their electronic health records. This approach will allow researchers to gain a more complete view of the real-life experiences of people living with lupus.
Research sponsors will have the opportunity to accelerate and refine research by leveraging extensive longitudinal data and a robust recruitment pipeline 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 burden of disease and generate evidence 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 the exploration of new approaches to the treatment of lupus," explained Kaleb Michaud, PhD, director of FORWARD. "With a commitment to global patient data privacy, people can now share their data with confidence and security, allowing research sponsors to make profound discoveries in the field of lupus, which could lead to better results and new treatment options.
"We envision a future in which patients have the ability to personally manage all of their healthcare information, resulting in more effective treatments, better disease management, better overall health, and the ability to engage to their support network," said Jennifer Lannon, Director of Patient Engagement and Advocacy at Alira Health. "The collaboration with FORWARD and the Lupus Registry represents an important step in this transformative 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 founding in 1998. Alira Health's Health Storylines has engaged more than 3,000 people with lupus since its launch in 2013. As part of the partnership, all of these people will be invited to participate in the Health Storylines Enhanced Lupus Registry.
The patient registry will serve as a continuous, global digital repository of symptoms and health-related information. This data is shared directly through online and mobile applications. The system ensures data protection and de-identification, preventing direct association of specific data points with individual members. The data is managed and maintained by Alira Health in collaboration with FORWARD to ensure its accuracy, hygiene and quality.
Data reporting results will be shared with members of the patient registry, allowing patients to gain insight into the collective outcomes experienced by the lupus population. Additionally, all published research results will be disseminated to the lupus community, giving them the opportunity to understand the registry's role in fostering groundbreaking discoveries.
About Alira Health
Alira Health is a global clinical research and advisory company whose mission is to humanize healthcare and life sciences, in collaboration with patients, through innovative technologies and expert guidance. From development to healthcare, Alira Health complements the expertise of its pharmaceutical, biotech, medtech and patient advocacy clients with a full spectrum of services across the entire lifecycle of its solutions. More information at AliraHealth.com.
FORWARD is an independent, not-for-profit research organization and one of the largest and oldest patient-reported research databases on rheumatic diseases. FORWARD works with patients, clinicians, researchers and industry to collect, analyze and share real-world data designed to advance knowledge of the causes, treatment, costs and outcomes of rheumatic diseases. More information available on the ForwardDatabank.org website.
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