#AAN2022 – Verana Health Launches Resource to Support SMA Research

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

Share this article:

Share article via email
apitegromab | SMA News Today | illustration of AAN neuron brain

Verana Health has launched a service called Neurology Qdata, which contains disease-specific datasets to help facilitate neuroscience research and develop novel treatment strategies.

The new resource was announced recently at the annual meeting of the American Academy of Neurology (AAN) in Seattle, Washington.

The first module to launch, called Qdata SMA, contains real-world de-identified data from people with spinal muscular atrophy (SMA) across different healthcare settings. It includes data for the disease’s natural history — how it unfolds in the absence of medical intervention — as well as information for patients given SMA treatments.

“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,” Sujay Jadhav, CEO of Verana, said in a press release.

Recommended Reading

#MDA2022 – ‘Amazing’ Walking Ability Seen in SMA Children on Spinraza

“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,” Jadhav added.

Qdata SMA is powered by the Axon Registry, which includes an average of six years’ worth of data for more than 3 million people. The new database was generated by harmonizing electronic health record data with insurance claims information using Verana Health’s data engine. It includes data garnered from text in the “notes” sections of health records — a valuable source of data that is often hard to include in similar datasets because it is by nature not standardized.

“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,” said Heather Moss, MD, PhD, associate professor at Stanford University and medical consultant to Verana Health.

“Qdata SMA helps enable researchers to tap into key insights contained in that unstructured data, such as motor score, ambulatory status, and respiratory status,” Moss added.

Recommended Reading
A pair of lungs, struggling to breathe, is shown in a close-up illustration.

SMA Severity Linked to Greater Declines in Respiratory Muscle Strength

Verana expects to release more modules for other conditions, including Parkinson’s disease, multiple sclerosis, and neuromyelitis optica spectrum disorder.

“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,” Jadhav said.

Note: The SMA News Today team is providing coverage of the American Academy of Neurology 2022 Annual Meeting.

Doctor finder promo


Recommended reading