SEQSTER and PatientsLikeMe recently announced the launch of a new study that aims to improve alpha-1 antitrypsin deficiency (AATD) patient care using longitudinal health data in real time.

“SEQSTER and PatientsLikeMe have come together to put the patient at the center of their health data,” said Ardy Arianpour, CEO and 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.”

The companies have been cooperating to develop a new operating system that allows AATD patients and researchers to share health data in a single place. Data collected will be used to understand how to reduce delays in diagnosis and disparities in health care, as well as to improve patient outcomes.


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“This study provides a unique opportunity for both SEQSTER and PLM [PatientsLikeMe] to connect disparate patient health data on one platform, while enhancing engagement by empowering patients in their own care,” said Chris Renfro-Wallace, chief operating officer at PatientsLikeMe.

Read about AATD diagnosis

AATD patients are invited to consent, connect, and share their health data seamlessly to keep a record of their health journey.

AATD is one of the most common and potentially lethal rare genetic conditions affecting those of European descent, although it often goes unseen. It is estimated that up to 90% of patients may be undiagnosed or misdiagnosed. Improving the diagnosis of AATD, therefore, is of the utmost importance. Adequate management of AATD is essential because it is a precursor to other diseases such as emphysema and chronic lung diseases, as well as liver complications.

Reference

SEQSTER and PatientsLikeMe launch national rare disease study. News release. SEQSTER; October 4, 2022.