NF1 Sleep Study – Looking for Participants

Dr. Richa Saxena and her research team at Massachusetts General Hospital are conducting a research study to learn more about sleep, circadian rhythm, quality of life, genetics, and other functions in patients with neurofibromatosis type 1 (NF1). Many patients with NF1 report sleeping problems and with the results from this study, we hope to advance our understanding of how patients with NF1 may experience sleep disturbances differently. We hope that our findings will inform clinical care for patients in the future.

 

What does the study involve?

• There are no in-person visits required, the study is entirely home-based
• $50 compensation is provided, along with a free personalized sleep report
• 2-week participation, approximately 10-minute daily commitment
• A remote (from home) Zoom consent visit
• Wrist activity monitor (similar to Apple Watch or Fitbit)
• Daily sleep logs and cognitive assessments
• Online questionnaires
• Saliva sample
   

Who can participate?

We are looking for adults 18 and older diagnosed with neurofibromatosis type 1 (NF1). We are also looking for adults not diagnosed with NF1 – if you have a friend or family member who is the same sex and similar age, please get in touch!
 

Who cannot participate?

Adults who have been diagnosed with central or obstructive sleep apnea or adults who work night shifts on a regular basis (for example, 7PM-7AM or 11PM-7AM) are not eligible to participate.
 

What are the benefits?

• $50 compensation
• Free personalized sleep report
• There is no cost to participate in this study, and your decision to participate will not affect your medical care
   

How do I join?

If you would like to learn more about this research study, please contact the study team at: MGHNF1SleepStudy@partners.org