Consensus recommendations for neurofibromatosis type 1 management in Asia Pacific
Abstract
Neurofibromatosis type 1 (NF1) is a complex multisystem disorder requiring coordinated multidisciplinary care. This study aimed to develop consensus recommendations for NF1 management in the Asia-Pacific region. A modified Delphi process involving two survey rounds and a virtual meeting was conducted with experts from nine countries. A total of 141 statements were evaluated using a 9-point Likert scale with a 75% consensus threshold. Consensus was achieved across key domains including diagnosis, genetic testing, surveillance, and management. Experts emphasized the importance of multidisciplinary care, risk-adapted surveillance, and integration of genetic counseling and imaging in clinical practice. These findings provide regionally relevant guidance to support consistent and practical NF1 management across diverse healthcare systems.
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Authors: Yemima Berman, Beom Hee Lee, Anthony Pak-Yin Liu, Yoshihiro Nishida, Ee Shien Tan, Zhichao Wang
Institutions: Shanghai Jiao Tong University, University of Hong Kong, University of Ulsan, Asan Medical Center, Hospital for Sick Children, Shanghai Ninth People's Hospital, Northern Sydney Local Health District, Nagoya University Hospital, KK Women's and Children's Hospital