Seqster, National Pancreas Foundation, Launch Pancreatic Disease Patient Registry

January 11, 2022

By Bio-IT World Staff

January 11, 2022 | Seqster announced today a multi-year partnership with The National Pancreas Foundation, a nonprofit organization that provides hope for those suffering from pancreatitis and pancreatic cancer, to create the country’s largest, most inclusive pancreatic disease patient registry. The registry uses Seqster technology to connect to any EHR, genomic DNA test, and wearable/remote monitoring device, providing patients with a complete longitudinal health record in real-time.

“We are very excited to enter a multi-year partnership with Seqster to create a one-of-a-kind patient registry that truly empowers our members. Our organization had been searching for a patient-centric solution for many years. Without the Seqster technology, this would have never been possible,” said Chief Executive Officer at NPF, David Bakelman, in a statement.  “Now, we can enable greater collaboration amongst researchers and our foundation, improve the quality of patient care, and significantly impact outcomes for patients with pancreatic disease.”

The registry will put real-world patient data in the hands of cutting-edge researchers who are working tirelessly to improve care and develop new and improved therapies for individuals suffering from pancreatic disease.

“We are beyond thrilled to empower NPF patients with a comprehensive tool to access all of their health data,” said Ardy Arianpour, CEO & Co-Founder of Seqster, in the same statement.  “The NPF-Seqster registry is a giant step forward for healthcare researchers and patients suffering from chronic pancreatic disease, providing full visibility into health data and connecting disparate data sources such as EHRs, DNA / Genomics and wearables, all in one place. This is especially critical for pancreatic disease patients receiving care across multiple providers and geographies.” 

Chronic pancreatitis is inflammation of the pancreas that does not heal or improve—it gets worse over time and leads to permanent damage. Chronic pancreatitis eventually impairs a patient’s ability to digest food and make pancreatic hormones. Industrialized countries have estimated an annual incidence rate of 5-12/100,000 people who will develop chronic pancreatitis. The prevalence of chronic pancreatitis is 50/100,000 people. Chronic pancreatitis often develops in patients between the ages of 30 and 40 and is more common in men than women.

Annually more than 60,000 adults in the United States will be diagnosed with pancreatic cancer. While the disease accounts for approximately 3% of all cancers, it is the third deadliest cancer. For many advocates of those affected by pancreatic diseases, quality healthcare does not focus solely on the management of these conditions, but is also concerned with the treatment of each patient as a whole. With its technology, Seqster will enable a comprehensive, holistic view of the patient, and streamline consent and data collection for clinical research that could lead to faster drug insights & discovery.

“NPF’s new registry, powered by Seqster’s technology, is a true leadership initiative that leverages an industry-leading patient-centric platform and allows our institutional partners to analyze, visualize, and query the data leading,” explained Jane Holt, NPF Co-Founder.”  This will lead to a deeper understanding of novel therapies, predictive biomarkers, and significantly improved patient outcomes.”