TREND’s 2020 Annual Letter and Citizen Scientist Announcement

Sefton Eisenhart
Sefton Eisenhart

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2020 was a transformative year for TREND, the disease communities we work with, and the world at large. The pandemic dealt us setbacks, but by focusing on patient communities and committing to uncovering more insights, TREND was able to come back stronger. Our focus is clearer than ever, and as we move further into 2021, it is important that we look back on all we have accomplished.

Before the pandemic hit, we were lucky enough to attend Rare Disease Week in Washington DC, getting a final chance to connect in-person with many of our rare disease friends. We were also invited to the National Institutes of Health (NIH) to present a poster titled: Insights From Closed Social Networks Advance the Understanding of Commonalities Between Rare Diseases. We believe that by exploring the commonalities and differences between diseases we will make many more important discoveries in 2021 and beyond.

During the lockdown we quickly shifted our efforts to enhancing our data analytics engine and using TREND data to generate novel insights into patient experience. Marisa Naujokas joined TREND as Director of Research and Colton Flowers joined as our Natural Language Processing Engineer. These hires highlight our commitment to further our vision of revolutionizing the world’s understanding of diseases.

We were honored to participate in the COVID Evidence Accelerator launched by The Reagan-Udall Foundation and Friends of Cancer Research to leverage real-world data to accelerate the pace of treatment discovery for COVID-19. As part of this initiative, we used our social-listening technology to analyze the online conversations of people diagnosed with COVID-19 and published our findings in the journal Population Health Management.

In 2020 we established many strong partnerships. TREND joined forces with RARE Revolution magazine and RARE Youth Revolution to better understand the perspectives and needs of children and young adults living with rare disease through surveys and social data analytics. We were excited to attract respondents from over 15 countries around the world for our first survey, which was designed to understand where the youth rare disease community spends time on online.

We released our flagship Community Voice Reports with our partners from the following rare disease communities:

  • CMTC and Vascular Malformations
  • Chromosome 8p Disorders
  • Pericarditis
  • Barth Syndrome
  • HNRNPH2-related Disorders
  • Craniopharyngioma

We also tackled more common conditions, partnering with to derive findings from one of their forums on metastatic breast cancer.

Our clients demonstrated more than ever their commitment to bringing treatments to our underserved communities.

  • Harmony Biosciences launched a clinical trial evaluating pitolisant for excessive daytime sleepiness in Prader-Willi Syndrome and we expanded our work to reach more rare diseases affected by sleep disorders.
  • Cydan II—the first orphan drug accelerator dedicated to advancing therapies that improve the lives of patients with rare diseases—used TREND insights to explore opportunities to bring new CPVT treatments into clinical development.
  • Kiniksa Pharmaceuticals hired Lora Marden as their Head of Patient Advocacy. Lora shares TREND’s commitment to ensuring that the voices of patients are heard and together we used the Pericarditis Community Voice Report to better understand what’s important to the community.
  • IntraBio released positive phase 2 data from their IB10001 clinical trial for the treatment of Niemann-Pick disease Type C. We continue to work with IntraBio and the foundation leaders to bring this important treatment to the patients who need it as quickly as possible.

TREND Community and COMBINEDBrain launched a novel, community-led initiative to quickly capture cross-condition insights and accelerate research. This year, we are presenting the TREND Community Citizen Scientist Award to its Founder, Terry Jo Bichell, for speeding the path to clinical treatments for people with severe rare genetic non-verbal neurodevelopmental disorders.

2020 was a tough year, but in many ways the world faced the kinds of challenges that members of the rare community are faced with every day. They are no strangers to quarantining, medical insecurity, and lack of treatments. If this year has proven anything, it is that we are more effective when we work together. Innovation can eliminate the distance between a problem and a solution. In 2021 and beyond, TREND Community intends to unite community members, caregivers, and stakeholders to build a future where discovery becomes limitless.

May this year bring you better days, progress, and hope,

Maria Picone, Co-founder and CEO

Christopher DeFelice, Co-Founder and CTO