Characterization and utilization of an international neurofibromatosis web-based, patient-entered registry: An observational study

In 2012, the Children's Tumor Foundation (CTF) created a web-based patient-entered database, the NF Registry, to inform patients of research opportunities for which they fit general eligibility criteria and enable patients to contact investigators who are seeking to enroll patients in approved trials. Registrants were recruited through CTF-affiliated NF clinics and conferences, through its website, and by word-of-mouth and social media. Following online consent, demographic information and details regarding manifestations of NF were solicited on the Registry website. Statistical analyses were performed on data from a cohort of 4,680 registrants (the number of registrants as of October 9, 2015) who met diagnostic criteria for one of the three NF conditions.