SEQSTER and PatientsLikeMe Launch National Rare Disease Study

Alpha-1 Patients Consent, Connect, and Share all their Health Data Seamlessly to power their longitudinal health record in real-time

SAN DIEGO, Oct. 4, 2022 /PRNewswire/ -- SEQSTER PDM, Inc. ("SEQSTER")  and PatientsLikeMe (PLM), leaders in patient-centric healthcare data technology and patient engagement have collaborated to launch one of the first rare-disease studies focused on Alpha-1 Antitrypsin Deficiency (AATD). The study aims to better understand how to reduce delays in diagnosis, decrease disparities in care and improve outcomes in patients with AATD through enhanced digital real time data, peer support and real-world evidence.

"We have been working with SEQSTER for the past year designing a best-in-class operating system to empower rare disease patients and researchers with longitudinal health data in real-time," stated Chris Renfro-Wallace, Chief Operating Officer of PatientsLikeMe. "This study provides a unique opportunity for both SEQSTER and PLM to connect disparate patient health data on one platform, while enhancing engagement by empowering patients in their own care."

AATD is a rare genetic condition occurring in approximately 1/3500 people. It is characterized by low levels of the alpha-1 antitrypsin protein, leading AATD patients to be very susceptible to lung and/or liver disease. Although AATD can be diagnosed through genetic testing or through AATD serum level, many cases of AATD are undiagnosed, with some studies suggesting up to 90% of patients may be undiagnosed or misdiagnosed.

"SEQSTER and PatientsLikeMe have come together to put the patient at the center of their health data," stated Ardy Arianpour, CEO & Co-Founder at SEQSTER. "Connecting patients to their own data, and empowering them through engagement is critical especially for those who live with a rare disease and have unique diagnostic odysseys involving many trips to specialists and medical tests."

Participants living with AATD now can consent, share, and engage with all of their data in one place, leading to a seamless longitudinal patient journey.

Seqster is the leading healthcare technology company that breaks down health data silos at scale. Its enterprise operating system aggregates disparate health data sources into a single, 360-degree view of a patient in real-time, solving a multitude of challenges for life sciences, patient engagement and data interoperability.

Seqster has nationwide coverage of EHRs from hospitals and medical groups, genomic DNA, wearables, pharmacy and social determinants of health data. Through its customizable white-label approach, Seqster provides accelerated access to de-identified, tokenized, real-time data and comprehensive curated data to address critical needs across the healthcare continuum.

Seqster is privately held and headquartered in San Diego. To learn more about the Seqster Operating System for Patient Registries, Clinical Studies and the Digital Front Door, please contact us at [email protected] or visit www.seqster.com.

PatientsLikeMe is the world's largest integrated community, health management, and real-world data platform. On PatientsLikeMe, members can put their disease experiences in context and find answers to their questions. They can easily connect directly with members who have the same conditions, are experiencing the same symptoms, or have used similar treatments. Data generated by members themselves are systematically collected and quantified while also providing an environment for peer support and learning. The site enables members to monitor symptoms of their condition(s), share their disease experiences and treatment outcomes, and learn how to improve their care through peer-to-peer interactions. These data capture the complex temporality and competing influences of different lifestyle choices, socio-demographics, conditions, and treatments on a person's health. Everything members share empowers the community with personal agency, establishing PatientsLikeMe as a clinically robust resource with demonstrated impact, including more than 100 studies in peer-reviewed medical and scientific journals. To learn more about PatientsLikeMe, visit www.patientslikeme.com.

SOURCE Seqster