May 23 2024
Research Survey: Understanding the Expectations and Experiences of Narcolepsy Symptoms in Pregnancy

Do you have a diagnosis of type 1 narcolepsy with cataplexy?

Have you given birth within the last 2 years?

Do you currently live in the United States or Canada?

If yes to all three of these questions, please continue reading to learn more about a research study that you may be eligible for.

Narcolepsy researchers are conducting a survey study of adults with type 1 narcolepsy and recent pregnancies in order to assess the impact of narcolepsy on pregnancy, and vice versa. The study team consists of narcolepsy researchers at Beth Israel Deaconess Medical Center, including Dr. Maggie Blattner, Dr. Thomas Scammell, and Kelsey Biddle. They hope to gain a better understanding of narcolepsy symptoms, treatment, and medical & social support before, during, and after pregnancy

This study is open to adults (age 18+) with type 1 narcolepsy (with cataplexy) who have given birth within the last 2 years and live in the United States or Canada. Your participation is completely anonymous and optional. Narcolepsy organizations and groups will not have access to your data, and you can end your participation at any time. The survey is composed of 2 parts: part 1 may take about 30 minutes to complete, and part 2 (optional) may take about 20 minutes to complete. Both parts of the survey can be completed over multiple sittings.

To thank you for your time, the researchers will make a $25 donation to your choice of the following patient support and advocacy organizations after you complete the survey:

– Hypersomnia Foundation

– Narcolepsy Network

– Project Sleep

– Wake Up Narcolepsy

Link to the survey If the hyperlink does not work for you, please copy and past this URL directly into your browser: https://redcap-edc.bidmc.harvard.edu/edata/surveys/?s=WFL7FDTKNRCYXHXC

Additionally, as part of this study, the study team will also be conducting Zoom interviews with participants to help them learn more about your experience with narcolepsy and pregnancy in your own words. If you have type 1 narcolepsy, have given birth within the last 2 years, live in the United States and Canada, and are interested in sharing more about your experience with narcolepsy and pregnancy during a 30-45-minute Zoom interview, please complete this brief, 1 minute survey If the hyperlink does not work for you, please copy and past this URL directly into your browser: https://redcap-edc.bidmc.harvard.edu/edata/surveys/?s=KJHMHXAR7PK4TEJJ

If you have any questions before or at any time during the study, please feel free to contact Dr. Maggie Blattner (mblattne@bidmc.harvard.edu).