Children with Neurofibromatosis type 1 (NF1) have a higher risk of developing autism spectrum disorder than their unaffected peers. Based on these clinical observations, an international consortium was established in 2015. This International NF1 Autism Consortium Team (INFACT) worked together over the ensuing years to leverage the collective experience of six major medical centers with expertise in NF1 and autism, culminating in the 2016 landmark study published in JAMA Psychiatry.
This year, the meeting was organized by Dr. Stephanie M. Morris, Instructor in Pediatric Neurology, and Co-Director of the St. Louis Children’s Hospital NF Clinical Program. Under her leadership, the INFACT group planned the next-phase studies aimed at understanding autism in NF1. In addition, new initiatives were also discussed, including the creation of a centralized database and the adoption of standardized screening guidelines for children with NF1.
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Morris SM, Acosta MT, Garg S, Green J, Huson S, Legius E, North KN, Payne JM, Plasschaert E, Frazier TW, Weiss LA, Zhang Y, Gutmann DH, Constantino JN. Disease Burden and Symptom Structure of Autism in Neurofibromatosis Type 1: A Study of the International NF1-ASD Consortium Team (INFACT). JAMA Psychiatry. 2016 Dec 1;73(12):1276-1284. doi: 10.1001/jamapsychiatry.2016.2600. PMID: 27760236.