academic article

• Perspectives of adults with neurofibromatosis regarding the design of psychosocial trials: Results from an anonymous online survey..  Clinical trials (London, England).  21:73-84. 2023
• Impact of the coronavirus pandemic on mental health and health care in adults with neurofibromatosis: Patient perspectives from an online survey..  American journal of medical genetics. Part A.  188:71-82. 2021
• Current Recommendations for Patient-Reported Outcome Measures Assessing Domains of Quality of Life in Neurofibromatosis Clinical Trials..  Neurology.  97:S50-S63. 2021
• Neurocognitive outcomes in neurofibromatosis clinical trials: Recommendations for the domain of attention..  Neurology.  87:S21-30. 2016
• Patient-reported outcomes of pain and physical functioning in neurofibromatosis clinical trials..  Neurology.  87:S4-S12. 2016