selected publications
-
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