Alira Health and FORWARD announce enhanced Lupus Registry to advance research and patient outcomes

Alira Health and the FORWARD rheumatic diseases databank announce a new collaboration for the enhanced Lupus Registry in the US to include real-world patient data gathered via Alira’s Health Storylines™ mobile app.

Alira Health, a global advisory and clinical research firm, and FORWARD, the National Databank for Rheumatic Diseases, have announced the establishment of a collaborative partnership to launch the enhanced Lupus Registry. Leveraging real-world data (RWD) captured through Alira Health’s Health Storylines™ mobile app, researchers will be able to gain a better understanding of lupus, leading to better treatment options and outcomes for people with the disease.

FORWARD, founded in 1998, is an independent, non-profit research organization and one of the longest-running and largest patient-reported research databanks for rheumatic conditions. As part of the new Alira–FORWARD partnership, almost 9000 individuals living with lupus will be invited to participate in the new enhanced Lupus Registry via the Health Storylines app, which has been used by patients since 2013.

Within the new alliance, Alira will be responsible for expansion and administration of the registry, plus data analysis and reporting. Individuals living with lupus will provide RWD through a structured registry questionnaire and use the Health Storylines app to share their day-to-day health experience data; they will also have the option to share their electronic health records. The data will be managed by Alira to ensure data accuracy, hygiene, and quality and to guarantee data protection and de-identification.

“Patient contributions to the registry will serve as a driving force for the exploration of novel approaches to Lupus treatment,” explained  Kaleb Michaud, 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,” continued 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.”

With the enhanced Lupus Registry, researchers will have the opportunity to tap into extensive longitudinal data to accelerate and refine research. The registry also provides a recruitment channel for prospective studies, a resource enabling them to explore new hypotheses and capture long-term outcomes. Researchers will be able to assess the current impact of the disease and efficiently generate evidence on new and existing treatments.

All research outputs from the registry will be shared with registry members, giving patients the opportunity to understand the collective outcomes experienced by the population with lupus and the role of the registry in fostering ground-breaking discoveries.