Title of Research: Adolescent and Caregiver Views Regarding Cutaneous Neurofibromas and Treatment
Protocol Number: 20120455
Principal Investigator: Ashley Cannon
Sponsor: Children’s Tumor Foundation, Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) Collaboration
- Do you have a child between the ages of 12-17?
- Does this child have Neurofibromatosis type 1?
- Does this child have at least one cutaneous neurofibroma (flesh-colored bump on or under the skin)?
If you answered yes to all 3 questions, we need your help to better understand your views about cutaneous neurofibromas and treatment. Cutaneous neurofibromas are benign (not cancerous), flesh-colored flat or raised bumps on or in the skin. Approximately 99% of people with Neurofibromatosis type 1 (NF1) will develop cutaneous neurofibromas during their life.
We are asking you and your child/children to participate in a research study to help us guide clinical trials for cutaneous neurofibromas in adolescent children. Participation involves completing an online survey. The survey is currently only available in English. The survey will first ask you, the caregiver, about your child’s cutaneous neurofibromas as well as your views about cutaneous neurofibroma treatment. This will take you 15-20 minutes to complete. The survey will then ask your child/children about their cutaneous neurofibromas and treatment. This will take each child 15-20 minutes to complete. Please be sure you and your child/children are available to complete the survey one right after the other.
If you have any questions about the research study or problems while taking the survey, please contact Ashley Cannon at ashleycannon@uabmc.edu.
