How we work

We turn the conversations of people who have rare, chronic, and emerging diseases and their caregivers/care partners into actionable insights through our proprietary evidence-accelerator approach. Above all, we prioritize the privacy and trust of every community member.

Our process

Trusted, invite-only partnerships

We establish trusted, long-term partnerships with invite-only online communities formed organically by people affected by rare, chronic, and emerging diseases. To date, we have partnered with more than 50 communities spanning a range of disease states and symptoms.

See TREND’s impact on the Hypoxic Ischemic Encephalopathy (HIE) community »

Proprietary analytics

We harness machine learning and natural language processing techniques with Krystie™, our proprietary analytics engine that captures the perspectives and experiences of people within these trusted communities.

Evidence acceleration

We find insights on disease impact and unmet needs. Our community voice report and other real-world evidence can be leveraged for many different audiences and objectives.

See the evidence in action

Ethical Framework

We developed and continue to refine an ethical framework that always prioritizes the privacy of our communities. Everything we do is guided by the following principles:

Listening is a privilege that must be continually earned
Patients and caregivers/care partners have the first word in providing the broader health care community with accurate information regarding their challenges and needs
When we work with private groups, we always ensure that every community member remains anonymous
Transparency is a prerequisite for progress
Data protection and privacy regulations are ever-changing. Our approach is always evolving and is aligned with the latest data protection protocols

As part of our ethical framework, we take the following measures to ensure privacy and anonymity:

“Listening to the voices of rare disease patients is a privilege, and TREND is setting the standard in the way it engages and develops relationships with patient communities.”

– Technology Ethics Leader