Dr. Adams is a Professor in Neurology and Pediatrics at the University of Rochester Medical Center and Co-Director of the Human Phenotyping and Recruitment Core for the NIH/NICHD-funded Intellectual and Developmental Disabilities Research Center at URMC.. She has been a member of the UR Batten Center (URBC) since 2002. As a pediatric neuropsychologist, her research focuses on characterizing the neurocognitive phenotype and natural history of rare pediatric-onset neurologic diseases, with a special focus on the NCLs and related disorders that result in childhood dementia.

This includes examining the impact of cognitive impairment and interfering behaviours on affected individuals and families, application of methods to ensure rigorous assessment in the setting of disease-related sensory and motor impairments and challenging behaviors, and approaches to reach rare families who are geographically dispersed around the globe. More broadly she has contributed to national and international activities to prepare the field for clinical trials in pediatric rare diseases through activities such as co-chairing a recent NIH-funded (1R13 NS145603-01) consensus meeting on neurocognitive and functional endpoints for clinical studies in the mucopolysaccharidoses, panelist for the UNC MPS Behavior Consensus Panel, participating in ISPOR and Critical Path Institute task forces/working groups related to performance outcome assessments, and serving as a past Chair of the Rare Disease Advisory Panel for the Patient Centered Outcomes Research Institute (PCORI).

 Dr. Adams also mentors early stage investigators pursuing career paths devoted to serving patients and families affected by pediatric rare disease.