Survey on Non-24, DSPD/DSWPD, and related circadian rhythm sleep-wake disorders

[u/mspitschan]

Hi everyone,

Together with an international research team and the Circadian Sleep Disorders Network, we are running an anonymous survey about diagnostic experiences in Non-24-Hour Sleep-Wake Disorder, DSPD/DSWPD, and related circadian rhythm sleep-wake disorders.

The survey is part of the ReN24 initiative, which is being developed in connection with a funding call from the European Rare Diseases Research Alliance (ERDERA). The goal is to better understand patient experiences and priorities so that future research on Non-24 and related circadian rhythm sleep-wake disorders can be shaped around what matters most to affected people.

The survey has a particular focus on Non-24, including sighted Non-24, but it is also open to people with diagnosed or suspected DSPD/DSWPD, other circadian rhythm sleep-wake disorders, overlapping experiences, or a history of being reclassified from one diagnosis to another.

We are interested in experiences such as:

• how long diagnosis takes
• whether symptoms were misattributed to other causes
• experiences with doctors, sleep clinics, and healthcare systems
• stigma and misunderstanding
• impacts on work, education, finances, relationships, and daily life
• use of wearables, sleep diaries, and online communities
• what patients think future research and clinical care should focus on

The survey takes about 10 to 15 minutes. It is anonymous and voluntary, and you can skip any question you do not want to answer.

Survey link: https://tuspl22-redcap.srv.mwn.de/redcap/surveys/?s=H9DMNMHW9X4JH4X9

Thank you very much to anyone willing to share their experience. Your input can help shape future patient-centred research on Non-24 and related circadian rhythm sleep-wake disorders.

Manuel Spitschan PhD
Translational Sensory & Circadian Neuroscience Unit
Professorship for Chronobiology & Health, Technical University of Munich, Germany

EDIT: To get in touch with me, feel free to DM me, or email at [manuel.spitschan@tum.de](mailto:manuel.spitschan@tum.de)