Individuals with a clinical diagnosis of NF1 were invited to participate in an online survey via advertisements in newsletters and social media groups of Australian support groups: Children's Tumour Foundation (CTF), Genetic Alliance Australia, the Genetic Support Network Victoria, Rare Voices, Syndromes Without a Name Australia, and the Genetic and Rare Disease Network. Respondents were required to be adults with NF1, or caregivers of children with NF1 (<18 years).
Participants without a diagnosis of NF1 were invited to participate as a control group via the CTF closed Facebook group, the Royal North Shore Hospital newsletter, and the University of Sydney's online Research Volunteer portal.
Recruitment for the study occurred 14 June 2019–28 February 2020. No identifying information was collected.
Study data were collected using Research Electronic Data Capture (REDCap) hosted at Royal North Shore Hospital (Harris et al., 2009 (link)).
Participants without a diagnosis of NF1 were invited to participate as a control group via the CTF closed Facebook group, the Royal North Shore Hospital newsletter, and the University of Sydney's online Research Volunteer portal.
Recruitment for the study occurred 14 June 2019–28 February 2020. No identifying information was collected.
Study data were collected using Research Electronic Data Capture (REDCap) hosted at Royal North Shore Hospital (Harris et al., 2009 (link)).
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