First disease-specific data module in neuroscience, Qdata™ SMA, helps power exclusive real-world evidence generation into a rare-disease patient journey from one of world's largest clinical neurology data registries
SAN FRANCISCO, April 4, 2022 /PRNewswire/ -- Verana Health®—a digital health company that delivers quality drug lifecycle and medical practice insights from an exclusive real-world data network—today announced the launch of its first Neurology Qdata™, available through Verana Health's real-world evidence service offerings. Neurology Qdata for life sciences companies will be featured at the American Academy of Neurology's (AAN) 2022 Annual Meeting alongside Verana Health's solutions for neurologists, including a new Quality Measures Dashboard for the Axon Registry® and Verana Trial Connect for physicians interested in participating in clinical trials. The AAN's Annual Meeting is in Seattle from April 2–7.
Neurology Qdata comprises quality, disease-specific datasets to help power neuroscience research and shape therapeutic strategies. Qdata™ SMA, the first neurology module to launch, is a real-world de-identified dataset reflective of spinal muscular atrophy (SMA) patients found across healthcare settings. Following the release of Qdata SMA, Verana Health expects to release additional Neurology Qdata modules for neurological diseases including Parkinson's Disease, multiple sclerosis, Neuromyelitis Optica Spectrum Disorder (NMOSD), and others.
"The American Academy of Neurology is dedicated to promoting the highest-quality, patient-centered neurologic care, and the Axon Registry plays a key role in that effort," said Mary E. Post, MBA, CAE, Chief Executive Officer of the American Academy of Neurology. "The Axon Registry empowers neurologists by giving them deeper insights into their quality of care and our partnership with Verana Health is key to helping advance the specialty of neurology through the therapeutic insights that can be unlocked with the help of Verana Health's Neurology Qdata."
Qdata SMA provides life sciences companies with real-world insights into the natural history of disease, treatments, and outcomes for SMA patients. It is powered by the Axon Registry, one of the largest real-world clinical data registries for neurology in the world. The Axon Registry includes an average of 6 years of longitudinal data pertaining to more than 3 million patients—reflecting more than 17 million patient visits—and nearly 1,400 participating Axon providers.
SMA is a neuromuscular disorder characterized by loss of motor neurons and progressive muscle weakness and atrophy. It is caused by a mutation in the SMN1 gene, which encodes a protein that is important for motor neuron survival. SMA is an autosomal recessive disease, meaning both SMN1 alleles must be mutated for an individual to be affected. Because SMA is an inheritable condition, family history of SMA is the sole risk factor for all SMA types; however, its occurrence among this population is sporadic.
"SMA is an incurable disease that progressively destroys nerve cells in the brainstem and spinal cord that control skeletal muscle activities such as speaking, walking, breathing and swallowing," said Heather Moss, MD, PhD, associate professor in the Stanford Departments of Neurology & Neurological Sciences and Ophthalmology and medical consultant to Verana Health. "To assess the effectiveness of treatments for SMA requires longitudinal data representing the patient journey, which is frequently captured as unstructured information in patient records. Qdata SMA helps enable researchers to tap into key insights contained in that unstructured data, such as motor score, ambulatory status, and respiratory status."
Qdata SMA is the result of harmonizing exclusive, point-of-care electronic health record (EHR) data with claims data—through Verana Health's VeraQ™ population health data engine—to understand disease progression and treatment patterns for de-identified SMA patients. The data in Qdata SMA have been curated with oversight from licensed, practicing neurologists to leverage clinical understanding of SMA to produce a more accurate representation of the patient population and disease characteristics.
Often, the most valuable data points for understanding the neurologic care of patients are found in the notes sections of EHRs as unstructured, free-text data, which cannot easily be extracted to inform research. Leveraging natural language processing (NLP) methodologies, Qdata SMA captures and normalizes this data, converting it into a structured format suitable for analyses.
For life sciences companies, Qdata SMA can help to deliver deep insights into the SMA patient journey as well as guide understanding around patient access and outcomes associated with FDA-approved SMA therapeutics. For participating practitioners, Qdata SMA can also help securely identify potential patient referrals to a clinical trial.
"Researchers and life sciences companies need a means of better understanding and tracking treatment patterns, patient outcomes, and adverse events associated with SMA therapeutics to help meet regulatory requirements, guide research, and inform business strategy. Qdata SMA offers exclusive insights into the SMA patient population by way of clinically validated SMA-specific data and a real-world view of the rare-disease patient journey," said Sujay Jadhav, Chief Executive Officer, Verana Health. "With Neurology Qdata—including Qdata SMA and the modules to follow it—life sciences companies can power insights for clinical trials, post-approval evidence generation, and commercialization with quality real-world data only found at Verana Health."
Verana Health at the American Academy of Neurology 2022 Annual Meeting (AAN 2022)
Verana Health will be exhibiting at the AAN 2022 in-person at booth 1701 and will showcase the new Axon Registry Quality Measures Dashboard for Academy members, to be launched in 2022. The dashboard delivers metrics that can help validate the quality of care neurologists provide, pinpoint opportunities for care improvement, and report clinical quality data to the Merit-based Incentive Payment System (MIPS). The Axon Registry extracts and submits data for MIPS quality measures to the Centers for Medicare & Medicaid Services (CMS) on behalf of practices that participate in the Axon Registry via integrated EHR systems.
Verana Health will also demonstrate its Verana Trial Connect (VTC) platform, which is available for interested Axon Registry participants. VTC supports registry-powered clinical trials for investigators who conduct research at a trial site. Plus, it supports physicians who would like to refer their patients to trials, particularly those with conditions for which there are no standards of care, such as rare diseases.
Verana Health also contributed to two research abstracts being presented during the meeting:
- Andrew M. Wilson, MD, MS, MBA will present "Examining National Representativeness of the Axon Registry" from 5:30 - 6:30 p.m. on Thursday, April 7.
- Richard T. Benson, MD, PhD will present "Measuring Ambulatory Neurologic Health Disparities with the Axon Registry" from 11:45 a.m. - 12:45 p.m. on Thursday, April 7.
To learn more about Neurology Qdata or to meet with Verana Health at AAN 2022, click here.
About Verana Health
Verana Health is a digital health company committed to delivering quality drug lifecycle and medical practice insights from an exclusive real-world data network. Verana Health is entrusted by key specialty medical societies to manage data from more than 20,000 healthcare providers and 70 electronic health record systems. Its healthcare data ecosystem is powered by VeraQ™, a population health data engine that securely powers a data integrity feedback loop of nearly a half-billion, point-of-care health encounters. By applying advanced analytics to fit-for-purpose, quality data sets (Qdata™), Verana Health helps life sciences collaborators generate real-world evidence, advance business insights, and accelerate medical innovations that promote quality of care and quality of life. For more information, visit www.veranahealth.com.
Media contact:
Megan Moriarty
Amendola Communications
913.515.7530
[email protected]
SOURCE Verana Health
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