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Home >Accelerate Solutions for Lupus Patients with the Lupus Registry

Lupus Registry

Gather Unique Insights and Accelerate Solutions for Lupus Patients
With the Lupus Registry

Access the real-life health experience of people with lupus to advance research, improve patient outcomes, and make better clinical decisions

We partnered with FORWARD to unlock the value of data from thousands of people with lupus in the US to improve the understanding of the patient and caregiver experience and needs. FORWARD, the National Databank for Rheumatic Diseases, is the largest patient-reported research databank for rheumatic disorders in the US.

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. 

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6,000+ lupus patients have participated in at least one survey*

*Surveys include questions relating to symptoms of systemic lupus, cutaneous lupus, and lupus nephritis

3,000+ patients with a self-reported or MD-confirmed SLE diagnosis

2,000+ patients with MD-confirmed SLE diagnosis

5 years average duration of follow-up

The lupus registry is an open cohort. Enrollment and follow-up remains active and ongoing.

Webinar Replay: The Lupus Journey: Addressing Unmet Patient Needs

How can you translate the insights of the lupus patient journey into value-added takeaways for your lupus asset?  View now on-demand! 

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Why Choose 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

Contact Us to Access Valuable Lupus Patient Insights

 

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