Received: 10 November 2017
Accepted: 14 August 2018
First Online: 29 August 2018
Ethics approval and consent to participate
: This research study was reviewed by the Partners Human Research Committee (Protocol 2015P001563) and determined to be exempt. Participant consent was not necessary for clinic network data, as only aggregate patient data statistics are reported by clinics. All participants of the NF Registry (or their parent/legal guardians) provided online informed consent prior to entering any data into the NF Registry as part of Western Institutional Review Board Protocol Number 20120455. This protocol includes sharing of deidentified data with parties involved in research of patients of neurofibromatosis.
: Not applicable.
: HR and PK are employees of the Children’s Tumor Foundation. VM and SP have received funding from the Children’s Tumor Foundation.
: Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.