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Clinical Corner: Patient Surveys & Focus Groups

August 14th, 2023

What are they used for?

Preliminary research through surveys and focus groups form the basis for answering clinical questions. Their purpose varies from understanding the patient journey, unmet needs, trial design, and more. This research information is critical to the regulatory process through the Food & Drug Administration (FDA), which approves new treatments for Narcolepsy and Idiopathic Hypersomnia.

 

Why does diversity in patient voices matter?

It is often the most prominent voice that speaks up, whether it be in a classroom, on social media, or in a community setting. Your voice is important. At Narcolepsy Network, we want to make sure a diversity of people with Narcolepsy or Idiopathic Hypersomnia are represented in this research.

 

How does Narcolepsy Network share these opportunities?

At Narcolepsy Network, we share patient survey and sponsored research through dedicated emails. Through emails, we can explain the goal of the survey and direct you to a separate webpage where you can decide if the opportunity is right for you. We want to remain neutral regarding participation and be clear that we are not endorsing a specific study.

 

Do we advise on patient survey and sponsored research design?

We do, and require this before we share any information with you. We partner with industry and third party research companies. Whenever possible, we advise on language and questions in order to help align with community perspectives. Our experience provides valuable insights that are patient-centered. Our industry policy respects patient privacy, requires transparency, and aligns with the values of our membership and community at large.

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Date Created: August 14th, 2023
Last Updated: December 21st, 2023