New Qdata Parkinson’s Disease Module Offers a Unique View into the Patient Journey


Heather E. Moss, MD, Ph.D.

Parkinson’s disease (PD) is the second most common neurodegenerative disease after Alzheimer’s, affecting roughly 1 million people in the U.S. and 10 million people worldwide. PD is characterized by tremors, slow movements and stiffness. Most patients with PD first develop early (prodromal) symptoms between the ages of 60 and 70, and these include impaired smell and sleep disorders. As the disease progresses, patients may struggle with walking and talking, depression, cognitive decline, and exhaustion.  

While there are treatments to control symptoms of PD, there currently is no cure. Nor is there a definitive diagnostic test for idiopathic (non-genetic) PD. Rather, a neurologist will consult a patient’s medical history and conduct a neurological exam to determine if any of the four cardinal signs of idiopathic PD – rest tremor, bradykinesia (slowness of movement), rigidity, and postural instability – are present. This information would be recorded in clinicians’ notes. 

The value of unstructured EHR data for understanding early-stage PD 

Having access to the de-identified real-world data in physician notes is the key component to help physicians and life sciences companies differentiate idiopathic PD from other parkinsonian disorders. Further, clinical documentation of early, or prodromal, symptoms of PD (such as impaired smell and sleep disorders) could provide physicians and life sciences companies with a greater understanding of the disease’s initial impacts, which are often only available in unstructured physician notes. The ability to identify PD in patients in its earliest stages in the brain, before the cardinal signs have developed, may provide a better opportunity to treat and prevent or delay the physical disabilities caused by Parkinson’s disease, which could improve the quality of life for patients. Physicians who care for patients with PD will welcome any new insights into early diagnosis and treatments that can help us help our patients. As our aging population grows, so too will the incidence of PD, making the need for new and better treatments even more urgent.

It is this potential for unlocking longitudinal patient medical records, prior to diagnosis, that will generate insights leading to earlier detection of symptoms and a better understanding of disease progression that makes Verana Health’s new Qdata Parkinson’s Disease data module so valuable. Life sciences companies could benefit from real-world insights that help us gain a better understanding of how the disease develops and progresses. 

Qdata Parkinson’s Disease is powered by de-identified electronic health record (EHR) data from the American Academy of Neurology’s Axon Registry®, one of the largest real-world clinical data registries for neurology in the world. This module contains extensive disease activity details on nearly 15,000 de-identified PD patients derived from patient notes from approximately 1,000 providers, with an average of three years of follow-up data. This rich data can lead to more comprehensive insights into the disease progression and treatment of PD at a scale greater than has previously been available. 

Qdata Parkinson’s Disease includes information about PD cardinal signs and symptoms that are not available in claims data. The module ensures life sciences companies have access to high-quality, de-identified data by including only patients in the Axon Registry who have a high likelihood of having idiopathic PD, including those who have at least one Parkinson’s ICD code and at least one of the following: 

  1. A second Parkinson’s ICD Code at least six months after the first; 
  2. At least two or more mentions of Parkinson’s cardinal signs in notes;
  3. At least one mention of deep brain stimulation surgery (an elective surgical procedure)  in notes. 

Insights through Real-world Evidence

The new module will also enable life sciences companies to better understand the progression and stages of PD after it is diagnosed. It will help characterize patients with motor complications from medications used to control PD motor symptoms. Despite the Unified Parkinson’s Disease Rating Scale (UPDRS) score not being included in many EHRs, it is the gold standard used by neurologists to monitor the response to such medications. Qdata Parkinson’s Disease includes key criteria for the UPDRS Part III score, such as severity of tremor, bradykinesia, rigidity, presence of postural instability and development of medication wearing off and medication side effects. This real-world evidence (RWE) from the module can be used to compare long-term changes in effectiveness and side effects of medications. 

It’s disheartening that we still have no cure for a disease that affects so many people, but we still have much to explore when it comes to treatments. The Qdata Parkinson’s Disease module has the ability to  unlock data-driven insights to support life sciences companies in developing new treatments, giving clinicians hope for additional treatment options. 

By gaining insights into the natural history of idiopathic PD and analyzing RWE regarding treatment patterns and outcomes, we may be able to improve PD treatments and move closer to a cure. Both would result in better outcomes and improved quality of life for patients.

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