selected publications
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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