Gather Unique Insights and Accelerate Solutions for Lupus Patients with the Lupus Registry
Access the real-life health experience of Lupus patients to advance research, improve patient outcomes, and make better clinical decisions
Lupus is a complex disease with diverse manifestation, limited treatment options and inequitable impact on the affected population. This makes research of patient experience, treatment patterns, and long-term clinical outcomes particularly challenging.
We partnered with FORWARD to help you overcome these hurdles. FORWARD, the National Databank for Rheumatic Diseases, is the largest patient-reported research databank for rheumatic disorders in the US.
Together with FORWARD, we unlock the value of data from thousands of US Lupus patients to improve the understanding of the patient and caregiver experience and needs.
About the Lupus Registry
The registry data serves as a valuable resource to unlock insights and accelerate research in Lupus. Comprehensive, de-identified, and complete clinical and patient-experience data at your fingertips — thanks to the collaboration between Alira Health and FORWARD.Why the Lupus Registry by FORWARD and Alira Health?
- Unique information on day-to-day health experiences gathered through a structured registry questionnaire, patients’ EHR and Alira Health’s proprietary mobile application known as Health Storylines™
- The databank enrolls patients continuously during the year and disease specific surveys are open every 6 months (January/July) for follow-up
- 25 years of unparalleled data collection, including socioeconomic data, health care utilization, treatment, along with PROs (EQ-5D, SF-36, PROMIS) linked with EHR
- High quality of the data matched with decades of analytic expertise of the Alira Health and FORWARD teams
- Alira Health’s adjacent services such as evidence synthesis, access strategy and economic modelling
- Ability to facilitate recruitment of patients for interventional clinical studies