How we work

Evidence Accelerators

TREND Evidence Accelerators bring together sponsors, key opinion leaders, and online support groups to turn the community’s conversations into actionable insights. We value every voice and we are excited to partner with every patient community. Below is a list of ongoing Evidence Accelerators.

Sleep in Rare

Description: “Sleep in Rare” is our flag-ship real-world evidence accelerator. Stakeholders from seven rare disease communities have joined the accelerator with the goal to deepen our understanding of the degree in which sleep disorders impact people living with rare disease.

Sponsors:

Harmony Biosciences and Avadel Pharmaceuticals

Global Vision

Description: Launched in Brazil, the accelerator is bringing together key opinion leaders and online support groups to understand the global experiences and perspectives of patients, caregivers, and families living with thyroid eye disease (TED) and neuromyelitis optica spectrum disorder (NMOSD).

Sponsors:

Horizon Therapeutics

Mental Health

Description: The goal of this initiative is to elucidate what underlies the link between mental health-related and disease-specific health outcomes and patient-reported experiences. This work will ultimately empower health professionals to deliver aligned and informed individual and peer support.

Sponsors:

Chiesi Global Rare Diseases and Horizon Therapeutics

Gout

Description: The team is focused on generating real-world evidence on mental health outcomes in the management of gout.

Sponsors:

Horizon Therapeutics, The Gout Support Group of America, Global Healthy Living Foundation, and the Alliance for Gout Awareness

Scleroderma

Description: TREND Community Ambassador and scleroderma advocate, Jessica Massengale, is leading the team to identify key topics for research and publication.

Sponsors:

In July 2022, sponsor Horizon Therapeutics, representatives from the scleroderma community, and Rare Revolution Magazine convened at the World Orphan Drug Congress to launch the accelerator.

Sjögren’s

Description: Key opinion leaders and community members living with Sjögren’s Syndrome plan to focus their research on disease impact on mental health and sexual dysfunction.

Sponsors:

Horizon Therapeutics, the accelerator launched in Rome during the 2022 International Symposium on Sjögren’s Syndrome.

Myasthenia Gravis

Description: The accelerator launched with a poster at World Orphan Drug Congress 2022 titled “Using Real-World Evidence to Understand the Diagnostic Journey of People Living with Myasthenia Gravis and its Impact on Mental Health.” If you are a researcher, clinician, advocate or person living with myasthenia gravis contact us to join the accelerator.

Sponsors:

Horizon Therapeutics

Pulmonary Fibrosis

Description: The pulmonary fibrosis accelerator will be launching soon. Contact us to participate.

Sponsors:

Horizon Therapeutics

IgG4-RD

Description: The IgG4-RD accelerator will be launching soon. Contact us to participate.

Sponsors:

Horizon Therapeutics

Lupus

Description: The lupus accelerator will be launching soon. Contact us to participate.

Sponsors:

Horizon Therapeutics

Recruiting

We are actively recruiting sponsorships for new communities. We encourage you to get in touch to see what we have on the horizon or discuss a new area of interest.