TREND Community

TREND Community is a “community-powered data analytics company, unlocking people’s conversations about living with rare and chronic diseases, delivering actionable, real-world insights, and driving progress in health care.” 

For 2.5 years PWSA | USA has been partnering with TREND Community to turn our online support groups into a source of real-world evidence. By collecting the most frequently discussed terms in the Facebook group discussions, TREND was able to gather insights that shed light on under-recognized symptoms and our community’s unmet needs, fueling critical research for our community. Our privacy is always protected. Only non-identifying data is used for research, with progress shared within the community.

Due to recent Facebook policy updates and limitations, TREND Community has shifted its research efforts to PWS Connect on Discord. We are inviting the PWS community to join us there!

What You’ll Find in PWS Connect

Everyone in the PWS community can join PWS Connect; parents, grandparents, siblings, caregivers, individuals with PWS, etc. There are multiple thematic discussions and groups to participate in. The age-specific groups are for parents only. Once your survey is filled out and processed, parents will automatically be added to appropriate age groups. 

Once you join PWS Connect, please share your story under the “Journeys” channel so that everyone can get to know you.

Why You Should Join

TREND insights linked PWS to narcolepsy!
In 2016, Dr. Daniel Glaze and Amee Revana of Texas Children’s Hospital (TCH) used TREND insights to reveal that narcolepsy and cataplexy symptoms are commonly experienced by our community. These data convinced Harmony Biosciences to pursue a clinical trial to study pitolisant in patients with Prader-Willi syndrome. TCH, TREND, and Harmony partnered to write this important recommendation on the diagnosis and management of sleep disorders in Prader-Willi syndrome:

TREND insights accelerate drug development!
Several biotech and pharmaceutical companies have used TREND insights to request orphan drug designation from the FDA for PWS and other rare diseases. Orphan drug designation is critical to stimulate the development of treatments for rare diseases by offering significant incentives and support to biotech and pharmaceutical companies.

TREND insights map the community lexicon to medical terminology!
TREND insights helped doctors understand the language that our community uses when  we talk about under-recognized symptoms. For example, many parents reported their kids faking sleep or experiencing strange sleep attacks. We now know that these experiences are likely related to narcolepsy and cataplexy. We believe that TREND insights can also give us important clues into hyperphagia to help us better understand this devastating symptom and develop promising treatments.

Together, PWSA USA and TREND Community will revolutionize the world’s understanding of PWS!

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