The Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) International Collaboration was formed to standardize the way clinical investigators determine the effectiveness of treatments in individuals with NF1, NF2 and Schwannomatosis. In November 2013, these groups reported on these standardized criteria in the journal Neurology.
One branch of the REiNS collaboration focused on the best ways to measure the effectiveness of treatments for NF1-associated optic pathway glioma (OPG). David H. Gutmann, MD PhD, and his colleagues considered parameters affected by OPG, such as vision loss, as well as potential biomarkers and quality of life measurements in order to arrive at evidence-based recommendations for future OPG treatment trials.
They determined that visual acuity assessments and an assessment of the optic disc should be used to determine whether or not a treatment is successful, and that a quality of life measure should be used to supplement findings.
REiNS expects that, with continued research, even better methods and treatments will be found for individuals living with NF1 and OPG.
Fisher MJ, Avery RA, Allen JC, Ardern-Holmes SL, Bilaniuk LT, Ferner RE, Gutmann DH, Listernick R, Martin S, Ullrich NJ, Liu GT. Functional outcomes measures for NF1-associated optic pathway glioma clinical trials. Neurology. 81: S15-24, 2013.