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Patient Journey Scientific Research

April 3rd, 2024

Last year, Narcolepsy Network partnered with Axsome Therapeutics on scientific research. KJT Group, an independent research firm, conducted an unbranded study in order to ensure patient privacy. This study sought to understand the burden of Narcolepsy Type 1 (NT1) and unmet needs associated with the disorder, in order to build scientific evidence needed to develop new treatments. 203 community members participated and all data was anonymized. On March 25, 2024, Axsome released results for this study, now called CRESCENDO. The topline findings affirm that even with pharmacological intervention, the burden of disease is substantial.

CRESCENDO Topline Findings:

  • 77% of NT1 patients reported experiencing cataplexy attacks, despite being treated
  • 64% of NT1 patients continue to experience excessive daytime sleepiness, as assessed by the Epworth Sleepiness Scale (ESS), despite being treated
  • 74% of treated NT1 patients exhibit cognitive impairment, as assessed by the British Columbia Cognitive Complaints Inventory (BC-CCI)
  • Depression and anxiety were experienced by 45% and 57% of NT1 patients, respectively.

Role of Scientific Research
Metrics are needed to build scientific evidence in the federal regulatory process for drug approval. The Federal Drug Administration (FDA) values patient insights and voices that are obtained in listening sessions like the Patient Focused Drug Development (PFDD) meetings. Yet, metrics from scientific studies like the CRESCENDO study build scientific evidence for the need for further pharmacological interventions to treat disorders.

Democratizing Patient Study Research Matters*
Narcolepsy Network is committed to promoting greater access to research findings and encourages corporate partners, when possible, to share scientific research with the public early on in their clinical development work. Patient journey study findings offer key scientific insights, and when made publicly available, can help a community identify the most pressing unmet needs.

*Note: Axsome is committed to work with Narcolepsy Network to provide a high level, patient focused summary for CRESCENDO. We will distribute the summary across the community and present it at one of our Clinical Update Webinars.

Our work with Research Sponsors
As a neutral and unbiased patient advocacy organization, we provide the same partnership opportunities to all academic or industry sponsors, and have a committee review process for requests. In order to ensure patient privacy, Narcolepsy Network requires sponsors to engage a third party research firm. For more information, please see our Industry Partnership Policy and Neutrality Statement.

Your Research Participation Matters!
Thank you to all community members who participate in clinical research. Your engagement in research helps us better understand the burden of living with narcolepsy and idiopathic hypersomnia, and may potentially provide evidence to support new treatments that address unmet needs in our community.

To learn about current research opportunities, click here.

Have questions? Email our Information & Resource Service.

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Date Created: April 3rd, 2024
Last Updated: April 3rd, 2024