Technology Transformation for a Non-Profit Medical Research & Patient Platform

Highlights

Problem:

A patient-focused nonprofit in the ALS (Amyotrophic Lateral Sclerosis) research space was trying to run something no off-the-shelf clinical trial tool was built for: a decentralized, multi-study research platform spanning speech, respiratory, motor, and cognitive data — collected remotely, at scale, from patients who often could no longer travel to a clinic. Technology was fragmented across disconnected tools, a single volunteer managed all technical operations, and valuable research data was effectively trapped, unable to flow between patients, coordinators, and the pharma and academic partners who needed it. Without a professionally managed technology function, the organization’s ability to run rigorous studies — and its credibility with research partners — was at risk.

Solution:

Latent introduced the managed pod model, rebuilding the organization’s entire technology function from the ground up as a unified research ecosystem with four connected systems:

• Research (Admin) Portal — the operational core for coordinators and proctors to manage studies, participants, sessions, consortia access, and compliance reporting across every active study.

• Participant Portal — a patient-facing web experience for structured data capture: voice recordings, standardized clinical assessments (ALSFRS-R, ROADS, ECAS), consent management, and session tracking, built for patients with limited mobility and dexterity.

• Consortia Portal — a de-identified analytics layer giving hospitals, pharmaceutical partners, and academic collaborators aggregated visibility into study progress and outcomes without exposing individual patient data.

• Mobile App — bringing the same structured data collection to patients’ phones, removing the friction of a desktop-only research tool for a population where every extra step matters.

The platform now runs eight distinct studies covering different facets of ALS — and, more recently, Alzheimer’s — progression: longitudinal speech analysis (built on Modality.AI and Aural Analytics), respiratory function tracking (Zephyrx FVC/SVC), wearable-based motor monitoring (Actigraph), a cognitive assessment battery (ECAS) that differentiates ALS-related decline from other neurodegenerative conditions, an early-detection study using machine learning on at-risk but asymptomatic individuals, and a live clinical trial tracking an experimental cell therapy through the platform end to end. Latent owned the full delivery lifecycle — data pipelines, role-based access control (admin, coordinator, proctor, participant, caregiver), PHI-safe data handling with a built-in hide/show toggle, and a structured release cadence the organization had never had.

Impact:

The platform now underpins what has become the world’s largest longitudinal ALS patient dataset — more than 900 patients, at-risk individuals, and caregivers enrolled across eight active studies, generating tens of thousands of structured sessions spanning voice, breathing, movement, and cognition. That scale of clean, unified, research-grade data is what unlocked pharma and academic partnerships that had been out of reach when the organization’s technology ran on volunteer capacity. Latent functions as the de facto product and engineering organization behind the platform, sustaining a pace of delivery — new studies, new integrations, new analytics — that no volunteer-run technology function could match. The platform has since expanded beyond a single country, now operating research studies in both the US and Australia, with the same architecture extending into Alzheimer’s research alongside its ALS work.

Key Outcomes:

• The world’s largest longitudinal ALS patient dataset — 900+ participants across 8 active studies

• A full decentralized clinical trial (DCT) platform: patient registry, eCOA/ePRO data capture, custom EDC, and eConsent unified in one system

• Real-time, de-identified consortia analytics for pharma and academic research partners

• Expanded from a single ALS study to eight studies across two countries and two disease areas (ALS and Alzheimer’s)

• Pharma partnerships and clinical trial participation (including a live cell-therapy trial) unlocked by research-grade data infrastructure