The goal of this fully decentralized, randomized controlled trial is to compare the efficacy of two educational interventions for individuals with Neurofibromatosis 1 (NF1). The primary objective of the study is to determine which intervention leads to higher rates of evidenced-based health screenings for NF1 patients in primary care settings.
Adults with NF1 and parents/guardians of children with NF1 from across the U.S. who do not go to a specialized NF clinic and who have an upcoming annual wellness visits (e.g. an annual physical, a well-child visit, etc.) scheduled with a primary care provider (PCP) are eligible to enroll in the study. To see if you might be eligible, fill out a prescreening survey here: https://redcap.link/mynfguide
Currently lives in the United States (including Puerto Rico and other United States territories)
Has a clinical diagnosis of neurofibromatosis 1
Does not attend an NF clinic within the Children's Tumor Foundation NF Clinic Network
Has an in-person, well-person visit with a primary care provider scheduled within 3 months of their consent
Only one person per household may participate in the study
Unwilling or unable to give informed consent
Massachusetts General Hospital
Lead sponsor
Patient-Centered Outcomes Research Institute
Collaborator