New questionnaires could help NF1 patients voice appearance concerns

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

* INCLUSION CRITERIA: * Participants must self-report a diagnosis of NF1 OR be the caregiver of a child with NF1 (5-17 years old with plexiform neurofibroma \[pNF\] or 12-17 years old with cutaneous neurofibroma \[cNF\]) The following for the participant or the caregiver of a child, as appropriate: * Participants with NF1 must self-report a pNF and/or cNF tumor(s) that is visible to that individual OR others * Caregivers of a child with NF1 must report a pNF and/or cNF tumor(s) that the child has that is visible to the child OR others * Age requirements: * \>= 8 years old (participants with pNF) * \>= 12 years old (participants with cNF) * \>= 12 years old (participants with pNF and cNF) * \>= 18 years (caregivers) * Access to a device with internet * Ability to understand English and comfort discussing their medical condition in English * The ability of adult participant or caregiver of minor participants to understand and the willingness to sign a written informed consent document EXCLUSION CRITERIA: * Physical or cognitive limitations that would prevent them from being able to participate in a focus group or interview, or unwillingness to do so * Since we will aim to have no less than 25 percent of participants from underrepresented\* groups, individuals from represented groups may not be able to participate after we have reached the maximum target for represented groups. Consistent with best practices for scale development and validation, this will help ensure that the measures are appropriate for people from a variety of backgrounds. \* Underrepresented groups are defined as people who identify as African American or Black, American Indian, Alaska Native, Hispanic/Latine, Native Hawaiian, and other Pacific Islander. * If saturation has been met within a particular age group, potential participants from that completed age group will no longer be eligible.