MS research network taps Seqster for data sharing

A research initiative in multiple sclerosis launched with support from Novartis has partnered with Seqster to provide a unified platform for data sharing, supporting patients with the disease, as well as researchers and healthcare providers.

The Multiple Sclerosis Implementation Network (MSIN) was set up last year in partnership with the Multiple Sclerosis Association of America (MSAA) and the Chronic Health Improvement Research Program (CHIRP) at Dartmouth Health to support “innovation and implementation of evidence-based care and best practices for people living with MS throughout the US.”

The overarching aim is to bring together academic, community-based, and private practice facilities through a common platform to share data and experiences and create an environment for patient-centric research.

It will be used to “integrate clinical and observational findings from the medical team with the perspectives communicated by the individuals living with MS and their care partners,” commented the MSAA's president and chief executive, Gina Ross Murdoch.

Dharmesh Patel, head of neuroscience at Novartis – which has a long history of developing treatments in MS, including drug therapies like Gilenya (fingolimod) and Kesimpta (ofatumumab) – said at the time the MSIN was founded that it would be instrumental in ensuring that “both the right treatments and clinical interventions reach the right patients in a timely manner.”

Seqster will provide the MSIN with access to its operating system and recently launched 1-Click Records, used to organise ‘longitudinal’ electronic health records (EHRs). Longitudinal EHRs are a single patient record that draws on data from numerous data sources and provides a chronological overview of their medical history, treatments, and health-related events.

The data in the platform is de-identified to preserve patient privacy and can bring together EHRs from hospitals and medical groups, genomic testing, wearables, and pharmacy records, as well as other variables. Researchers can use the resource for a range of applications such as real-world evidence (RWE) studies, outcomes research, and clinical trials.

The company’s patient data platform has attracted a number of pharma clients, including drugmakers Boehringer Ingelheim and Takeda and contract research organisation United Biosource.

“This transformative initiative […] has the potential to redefine the landscape of multiple sclerosis treatment and management,” said Ardy Arianpour, chief executive and co-founder of Seqster.

“By uniting healthcare professionals, researchers, and the resilient MS community, we can harness the immense power of data and 1-Click Records to transform evidence-based care and elevate health outcomes to unprecedented heights.”

Recently, pharmaphorum spoke with Arianpour, together with Dr Brigham Hyde, co-founder and CEO of Atropos Health, about their latest partnership, with its overall goal of personalised registries and the notion of a general digital front door for patient information. You can listen to the podcast below.