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
• Health literacy assessment in adults with neurofibromatosis: electronic and short-form measurement using FCCHL and Health LiTT..  Journal of neuro-oncology.  136:335-342. 2017
• First report of factors associated with satisfaction in patients with neurofibromatosis..  American journal of medical genetics. Part A.  173:671-677. 2017
• First use of patient reported outcomes measurement information system (PROMIS) measures in adults with neurofibromatosis..  Journal of neuro-oncology.  131:413-419. 2016
• Patient-reported outcomes of pain and physical functioning in neurofibromatosis clinical trials..  Neurology.  87:S4-S12. 2016
• Mind-body therapy via videoconferencing in patients with neurofibromatosis: An RCT..  Neurology.  87:806-14. 2016
• Health-related Quality of Life of Individuals With Neurofibromatosis Type 2: Results From the NF2 Natural History Study..  Otology & neurotology : official publication of the American Otological Society, American Neurotology Society [and] European Academy of Otology and Neurotology.  37:574-9. 2016
• Quality of life among children and adolescents with neurofibromatosis 1: a systematic review of the literature..  Journal of neuro-oncology.  122:219-28. 2015
• Examining perceived cancer risk among patients with neurofibromatosis type 1..  Journal of neuro-oncology.  122:127-33. 2015
• The relaxation response resiliency program (3RP) in patients with neurofibromatosis 1, neurofibromatosis 2, and schwannomatosis: results from a pilot study..  Journal of neuro-oncology.  120:103-9. 2014
• Quality of life among adult patients with neurofibromatosis 1, neurofibromatosis 2 and schwannomatosis: a systematic review of the literature..  Journal of neuro-oncology.  114:257-62. 2013