Active Studies

Barriers to Healthcare Access and Psychosocial Experiences in Adults with Neurofibromatosis Type 1

Offered by: University of Colorado Anschutz
Conducted by: Katelyn Glowinski, genetic counseling student, master’s program

This research study is designed to gain a better understanding of healthcare barriers faced by adults with Neurofibromatosis Type 1 (NF1), as well as evaluate any associations between these barriers and your self-reported neuropsychiatric or mental health status.

If you join the study, you will be asked to fill out short 20-minute surveys. The survey is entirely anonymous. There could be possible discomforts or risks around answering personal questions about sensitive topics relating to your healthcare barriers or mental health history. These questions are optional. The data collected will be used for this study and may also be important for future research. This study is not designed to benefit you directly. Upon the completion of the survey, you will be provided a link to enter a raffle for a $50 Amazon gift card. Every effort will be made to protect your privacy and confidentiality by not asking for your name in the survey. Your survey responses will not be linked to the personal information you provide for the raffle to protect your anonymity. Please do not share, post, or distribute this survey link publicly, as it is intended solely for invited participants to protect the integrity of the study data.

Click here for survey: https://redcap.ucdenver.edu/surveys/?s=EK9JMRPETXNPDDFX

Who Can Participate?

  • Individuals aged 18 years or older
  • Individuals with a clinical diagnosis of Neurofibromatosis Type 1 (NF1)
  • Individuals currently receiving care within participating UCHealth adult clinics, or who are registered members of the CTF national NF Registry, or members of an NF Facebook group
  • Individuals who are able to read, understand, and independently complete the digital survey instrument in English

Timeline

Start Date: 10/07/2026

End Date: 03/15/2027

Learn More & Get in Touch

For more information about the study or any questions, please contact:

Email: Katelyn Glowinski
Call: 224-829-8103

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