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Gabriele Brambilla

Margaret Carlson

John Mclaughlin

Susan Irving

Gael Clerc

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Aida Pabon

Nadia Zareen

Aishlin Harrison

Anshul Sharma

Cristiana Troli

Andrea Tedesco

Valeria Barbieri

Raphael Ruocchio

Home >Accelerate Solutions for Lupus Patients with the Lupus Registry
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.
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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.
6,000+ lupus patients have participated in at least one survey
3,067 patients with a self-reported or MD confirmed SLE diagnosis
2,033 patients with MD-confirmed SLE diagnosis
1,057 SLE patients currently engaged
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
 
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Shape study designs, formulate research strategies, and conduct trials to unearth novel findings and assess Lupus treatment approaches.