Lupus
Non-Interventional
Registry
How LRA Built the World’s Largest Lupus Registry—3,500 Patients in Under 6 Months
Lupus
Non-Interventional
Registry
How LRA Built the World’s Largest Lupus Registry—3,500 Patients in Under 6 Months
Lupus
Non-Interventional
Registry
How LRA Built the World’s Largest Lupus Registry—3,500 Patients in Under 6 Months
How LRA Built the World’s Largest Lupus Registry—3,500 Patients in Under 6 Months
Overview
The Lupus Research Alliance partnered with Embleema to launch the Lupus Landmark Study, the largest lupus registry in the world—going live across 20+ sites in under 6 months and targeting 3,500 patients with integrated clinical, genomic, and patient-reported data. Faced with the limitations of fragmented site workflows, costly CRO models, and manual data harmonization, LRA needed a faster, more scalable solution to power real-world evidence and precision research. Embleema’s no-code, regulatory-ready platform delivered high-quality, longitudinal data from 60,000+ care centers globally—at a fraction of traditional costs.
Challenge: Scaling a Complex, Multi-Site Registry—Fast
The Lupus Research Alliance (LRA) set out to launch the Lupus Landmark Study with over 3,500 patients across 20+ academic sites in the U.S. and Canada. Their goal: collect deep clinical, genomic, and patient-reported data over a five-year period to accelerate discoveries in a notoriously heterogeneous disease.
But based on industry benchmarks, a registry of this scale would take 12 to 18 months just to launch—before the first patient could even be enrolled. Legacy approaches involving fragmented site-level systems, high-cost CROs, and siloed data collection tools made it difficult to move faster. Integrating structured EHR data with unstructured sources like PROs, genomics, and biosamples typically requires expensive, manual curation that strains timelines and budgets.
Without a streamlined, patient-centric approach, the Lupus Landmark Study risked falling short on both power and precision—delaying critical insights and undermining its long-term regulatory and therapeutic value
Solution: A Configurable, Patient-Powered Registry Built for Real-World Data
After a competitive selection process involving multiple CROs and technology vendors, Embleema was chosen as LRA’s registry partner. Why? Because the Embleema platform enabled the study to meet the unique demands of precision RWE—faster, more affordably, and with built-in compliance.
Key features of Embleema’s solution:
Unified, longitudinal data architecture that natively integrates EHR, genomic, PRO, and real-world data feeds—without requiring site-level customization.
No-code configuration enabled Embleema to launch a full multi-site registry in under 6 months, dramatically accelerating study startup timelines.
Patient-facing applications and eConsent flows that boost engagement and retention across diverse populations.
Regulatory-grade compliance (HIPAA, GDPR, and 21 CFR Part 11) embedded in platform workflows, reducing IRB and legal overhead.
The solution also included real-time dashboards for study coordinators and centralized data quality monitoring, enabling LRA to shift from reactive cleanup to proactive data assurance. Traditional registry models weren’t built for the speed, complexity, or data diversity that precision medicine demands. That's what makes Embleema different.
Study coordinator site app displays sample data for a Lupus Landmark Study participant.
Impact: Launch Speed, Cost Savings, and Research-Grade Data at Scale
With Embleema’s platform in place, the Lupus Landmark Study became the largest lupus registry in the world—and one of the fastest launched at this scale.
Quantitative outcomes:
3,500 patient registry
< 6 months from kickoff to live registry across 20+ top research sites
93.5% patient retention year-over-year, well above industry average for longitudinal studies
Real-world data integrated by EMRs from 60,000+ care centers
Qualitative outcomes:
LRA gained a centralized, analysis-ready dataset suitable for biomarker discovery, disease progression modeling, and future regulatory submissions
Site coordinators reported reduced workload thanks to streamlined data entry and monitoring tools
Patient retention improved due to personalized, digital-first engagement and data return features
This partnership demonstrates how Embleema helps research organizations move from fragmented data collection to trusted, patient-powered evidence generation—at the speed and scale modern research demands.
Ready to discuss your complex disease study?
Overview
The Lupus Research Alliance partnered with Embleema to launch the Lupus Landmark Study, the largest lupus registry in the world—going live across 20+ sites in under 6 months and targeting 3,500 patients with integrated clinical, genomic, and patient-reported data. Faced with the limitations of fragmented site workflows, costly CRO models, and manual data harmonization, LRA needed a faster, more scalable solution to power real-world evidence and precision research. Embleema’s no-code, regulatory-ready platform delivered high-quality, longitudinal data from 60,000+ care centers globally—at a fraction of traditional costs.
Challenge: Scaling a Complex, Multi-Site Registry—Fast
The Lupus Research Alliance (LRA) set out to launch the Lupus Landmark Study with over 3,500 patients across 20+ academic sites in the U.S. and Canada. Their goal: collect deep clinical, genomic, and patient-reported data over a five-year period to accelerate discoveries in a notoriously heterogeneous disease.
But based on industry benchmarks, a registry of this scale would take 12 to 18 months just to launch—before the first patient could even be enrolled. Legacy approaches involving fragmented site-level systems, high-cost CROs, and siloed data collection tools made it difficult to move faster. Integrating structured EHR data with unstructured sources like PROs, genomics, and biosamples typically requires expensive, manual curation that strains timelines and budgets.
Without a streamlined, patient-centric approach, the Lupus Landmark Study risked falling short on both power and precision—delaying critical insights and undermining its long-term regulatory and therapeutic value
Solution: A Configurable, Patient-Powered Registry Built for Real-World Data
After a competitive selection process involving multiple CROs and technology vendors, Embleema was chosen as LRA’s registry partner. Why? Because the Embleema platform enabled the study to meet the unique demands of precision RWE—faster, more affordably, and with built-in compliance.
Key features of Embleema’s solution:
Unified, longitudinal data architecture that natively integrates EHR, genomic, PRO, and real-world data feeds—without requiring site-level customization.
No-code configuration enabled Embleema to launch a full multi-site registry in under 6 months, dramatically accelerating study startup timelines.
Patient-facing applications and eConsent flows that boost engagement and retention across diverse populations.
Regulatory-grade compliance (HIPAA, GDPR, and 21 CFR Part 11) embedded in platform workflows, reducing IRB and legal overhead.
The solution also included real-time dashboards for study coordinators and centralized data quality monitoring, enabling LRA to shift from reactive cleanup to proactive data assurance. Traditional registry models weren’t built for the speed, complexity, or data diversity that precision medicine demands. That's what makes Embleema different.
Study coordinator site app displays sample data for a Lupus Landmark Study participant.
Impact: Launch Speed, Cost Savings, and Research-Grade Data at Scale
With Embleema’s platform in place, the Lupus Landmark Study became the largest lupus registry in the world—and one of the fastest launched at this scale.
Quantitative outcomes:
3,500 patient registry
< 6 months from kickoff to live registry across 20+ top research sites
93.5% patient retention year-over-year, well above industry average for longitudinal studies
Real-world data integrated by EMRs from 60,000+ care centers
Qualitative outcomes:
LRA gained a centralized, analysis-ready dataset suitable for biomarker discovery, disease progression modeling, and future regulatory submissions
Site coordinators reported reduced workload thanks to streamlined data entry and monitoring tools
Patient retention improved due to personalized, digital-first engagement and data return features
This partnership demonstrates how Embleema helps research organizations move from fragmented data collection to trusted, patient-powered evidence generation—at the speed and scale modern research demands.
Ready to discuss your complex disease study?
Overview
The Lupus Research Alliance partnered with Embleema to launch the Lupus Landmark Study, the largest lupus registry in the world—going live across 20+ sites in under 6 months and targeting 3,500 patients with integrated clinical, genomic, and patient-reported data. Faced with the limitations of fragmented site workflows, costly CRO models, and manual data harmonization, LRA needed a faster, more scalable solution to power real-world evidence and precision research. Embleema’s no-code, regulatory-ready platform delivered high-quality, longitudinal data from 60,000+ care centers globally—at a fraction of traditional costs.
Challenge: Scaling a Complex, Multi-Site Registry—Fast
The Lupus Research Alliance (LRA) set out to launch the Lupus Landmark Study with over 3,500 patients across 20+ academic sites in the U.S. and Canada. Their goal: collect deep clinical, genomic, and patient-reported data over a five-year period to accelerate discoveries in a notoriously heterogeneous disease.
But based on industry benchmarks, a registry of this scale would take 12 to 18 months just to launch—before the first patient could even be enrolled. Legacy approaches involving fragmented site-level systems, high-cost CROs, and siloed data collection tools made it difficult to move faster. Integrating structured EHR data with unstructured sources like PROs, genomics, and biosamples typically requires expensive, manual curation that strains timelines and budgets.
Without a streamlined, patient-centric approach, the Lupus Landmark Study risked falling short on both power and precision—delaying critical insights and undermining its long-term regulatory and therapeutic value
Solution: A Configurable, Patient-Powered Registry Built for Real-World Data
After a competitive selection process involving multiple CROs and technology vendors, Embleema was chosen as LRA’s registry partner. Why? Because the Embleema platform enabled the study to meet the unique demands of precision RWE—faster, more affordably, and with built-in compliance.
Key features of Embleema’s solution:
Unified, longitudinal data architecture that natively integrates EHR, genomic, PRO, and real-world data feeds—without requiring site-level customization.
No-code configuration enabled Embleema to launch a full multi-site registry in under 6 months, dramatically accelerating study startup timelines.
Patient-facing applications and eConsent flows that boost engagement and retention across diverse populations.
Regulatory-grade compliance (HIPAA, GDPR, and 21 CFR Part 11) embedded in platform workflows, reducing IRB and legal overhead.
The solution also included real-time dashboards for study coordinators and centralized data quality monitoring, enabling LRA to shift from reactive cleanup to proactive data assurance. Traditional registry models weren’t built for the speed, complexity, or data diversity that precision medicine demands. That's what makes Embleema different.
Study coordinator site app displays sample data for a Lupus Landmark Study participant.
Impact: Launch Speed, Cost Savings, and Research-Grade Data at Scale
With Embleema’s platform in place, the Lupus Landmark Study became the largest lupus registry in the world—and one of the fastest launched at this scale.
Quantitative outcomes:
3,500 patient registry
< 6 months from kickoff to live registry across 20+ top research sites
93.5% patient retention year-over-year, well above industry average for longitudinal studies
Real-world data integrated by EMRs from 60,000+ care centers
Qualitative outcomes:
LRA gained a centralized, analysis-ready dataset suitable for biomarker discovery, disease progression modeling, and future regulatory submissions
Site coordinators reported reduced workload thanks to streamlined data entry and monitoring tools
Patient retention improved due to personalized, digital-first engagement and data return features
This partnership demonstrates how Embleema helps research organizations move from fragmented data collection to trusted, patient-powered evidence generation—at the speed and scale modern research demands.
