Neurology Qdata Module Will Provide Real-World Evidence from De-Identified Parkinson's Patients in American Academy of Neurology's Axon Registry
SAN FRANCISCO, April 21, 2023 /PRNewswire/ -- Verana Health®—a digital health company elevating quality in real-world data (RWD)—today announced it's releasing in Q2 2023 a Qdata® module for Parkinson's Disease (PD). The Qdata Parkinson's Disease data module offers extensive disease activity details and insights based on real-world data from an initial 15,000 de-identified patients derived from electronic health records (EHRs). This de-identified patient cohort will continue to expand as more data is ingested and curated into the new module. The module is powered by the American Academy of Neurology (AAN) Axon Registry®, one of the largest real-world clinical data registries for neurology in the world, and is being announced during the 2023 AAN Annual Meeting in Boston (April 22-27).
By accessing, curating, and analyzing de-identified EHR data from the Axon Registry, Qdata Parkinson's Disease will provide unique and comprehensive information about the natural history of the disease, treatment patterns and outcomes, disease burden, healthcare resource utilization, safety events, and comparative effectiveness of treatments. This will help enable researchers and physicians to better meet the current needs of patients with PD and to develop and evaluate new treatments and protocols.
Nearly 1 million people in the U.S. and 10 million worldwide have PD. This brain disorder is the second most common neurodegenerative disease after Alzheimer's. Characterized by tremors, slow movements and stiffness, early (or prodromal) symptoms of PD are subtle and include impaired smell and sleep disorders. But as PD progresses, patients may struggle with walking and talking, depression, cognitive decline, and exhaustion. Most PD patients first develop the disease between the ages of 60 and 70.
There currently are no definitive diagnostic blood or lab tests for diagnosing non-genetic cases of PD, which are known as idiopathic PD, nor is there a known cure. A diagnosis usually is made by a neurologist who reviews the patient's medical history, conducts a neurological exam, and documents cardinal signs and symptoms of PD in their EHR notes. The four cardinal signs of idiopathic PD are rest tremor, bradykinesia (slowness of movement), rigidity, and loss of postural reflexes. Neurologists and researchers use the presence of these signs to differentiate PD from other neurodegenerative disorders such as Alzheimer's disease.
Verana Health's Qdata Parkinson's Disease will give researchers access to high-quality de-identified data by including only patients in the Axon Registry who have at least one Parkinson's ICD code and at least one of the following:
In the past, much of the research was based on claims data that doesn't include cardinal signs and symptoms for PD. The Qdata Parkinson's Disease module definition was validated against clinical notes, which also does not exist in claims data.
Qdata Parkinson's Disease will help researchers better understand the disease's progression and stages. In research settings, PD severity is assessed using the Hoehn and Yahr scale and the UPDRS score, which is the gold standard used by neurologists for monitoring the response to medications used to decrease the signs and symptoms of PD. The UPDRS score is not included in many EHRs, however, the Qdata module will include key criteria for the UPDRS Part III score, such as severity of tremor, bradykinesia, and rigidity, as well as the presence of postural instability. The module will also help researchers better define groups of de-identified patients with motor complications from current medications used to control Parkinson's disease motor symptoms.
"This new Qdata module will open up the opportunity to follow de-identified patients with idiopathic Parkinson's Disease and understand the patient journey, including prodromal states," said Heather Moss, M.D., Ph.D., associate professor at Stanford University and medical consultant to Verana Health. "It's disheartening that a disease that affects so many people still has no cure, but by expanding our understanding of Parkinson's Disease progression, we can learn how to better treat its debilitating symptoms and help improve the quality of life for patients."
"Real-world de-identified evidence of the kind contained in the Axon Registry is critical for researchers to advance treatments for patients with Parkinson's Disease and other neurological conditions," said Mary Post, CEO of the American Academy of Neurology. "The insights drawn from our ongoing partnership with Verana Health will help our members, researchers and trial sponsors develop more effective treatments for patients."
Qdata Parkinson's Disease will include data from roughly 1,000 providers and offer researchers an average of three years of follow-up data on nearly 15,000 de-identified PD patients. The new module will benefit life sciences companies for:
"Qdata Parkinson's Disease will provide researchers with real-world insights that may fuel breakthroughs in our ability to treat and prevent or delay the physical disabilities caused by Parkinson's Disease," said Sujay Jadhav, CEO of Verana Health. "Qdata Parkinson's Disease will be extremely valuable given our aging population, large unmet treatment needs and the robust pipeline for expensive new therapeutics to treat this disease."
Verana Health launched its first neurology module, Qdata SMA (spinal muscular atrophy), in April 2022, followed by Qdata MS (multiple sclerosis).
Abstracts to be presented at the 2023 AAN Annual Meeting
Verana Health will present three abstracts at the 2023 AAN Annual Meeting:
1. Multi-registry Analysis of Patients with Multiple Sclerosis (MS) and Neuromyelitis Optica (NMO) to Improve Capture of Demographic Data and Compare Visual Outcomes.
2. Identifying MS Relapses from Clinical Notes Using Combined Rule-based and Deep Learning Methodologies
3. Advancing Knowledge and Clinical Development in Frontotemporal Dementia (FTD) Using the American Academy of Neurology's (AAN) Axon Registry®
About Verana Health
Verana Health® is a digital health company elevating quality in real-world data. Verana Health operates an exclusive real-world data network of more than 20,000 healthcare providers (HCPs) and about 90 million de-identified patients, stemming from its strategic data partnerships with the American Academy of Ophthalmology®, American Academy of Neurology, and American Urological Association. Using its clinician-informed and artificial intelligence-enhanced VeraQ® population health data engine, Verana Health transforms structured and unstructured healthcare data into curated, disease-specific data modules, Qdata®. Verana Health's Qdata helps power analytics solutions and software-as-a-service products for real-world evidence generation, clinical trials enablement, HCP quality reporting, and medical registry data management. Verana Health's quality data and insights help drive progress in medicine to enhance the quality of care and quality of life for patients. For more information, visit www.veranahealth.com.
Media contact:
Megan Moriarty
Amendola Communications
913.515.7530
mmoriarty@acmarketingpr.com
SOURCE Verana Health