REiNS Study: Patient preferences for gene therapy in neurofibromatosis and schwannomatosis

Author: REiNS
Published On: 10/20/2024

The REiNS International Collaboration Gene Therapy Working Group is conducting an online research survey titled Patient preferences for gene therapy in neurofibromatosis and schwannomatosis (NF/SWN). The purpose of the study is to learn more about the perspectives of patients and guardians regarding future gene therapy. Study participation involves completing a one-time survey online. 

The survey will be open until December 31, 2024.

Inclusion criteria:

  • Adult (18 years and older) with any type of NF/SWN

AND/OR

  • Parent of a child (under 18 years) with any type of NF/SWN

AND

  • Live in the USA
  • Able to read and understand English 

Taking part in this research study is voluntary and the first 400 respondents will receive a $15 electronic gift card at the end. The survey will take approximately 35 minutes.  

Since your answers are anonymous, please do not include any identifying information in your responses. The personal information needed to receive the participant incentive will be collected separately and not linked to your survey responses. If you have questions about this study, please contact Miranda McManus, MS, at mcmanusm@cofc.edu.

To access the research survey, please click the link below or copy and paste the URL into your web browser:

https://cofc.qualtrics.com/jfe/form/SV_5b4SJH1dSNlspjo?source=NFNetwork

Thank you for your consideration.

This research study has been reviewed by the College of Charleston Institutional Review Board (IRB protocol 2024-05-008) in Charleston, SC.


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