Hannah’s Hope Fund began funding a Natural History Study of the disease at Columbia University, under Principle Investigator (PI), Dr. Dougals Sproule, in 2011. The natural history study is now taking place at the National Institutes of Health (NIH) in Bethesda, MD, under PI, Dr. Carsten Bonnemann.
What is a natural history study and why is it needed?
A natural history study tracks the untreated course of GAN. It is needed in order to establish both safety and efficacy of experimental trials. Essentially, the pre-treatment data sets collected during the natural history study are used to compare to post-treatment data sets to learn if the investigational new drug product (IND) is making patients worse, better or having no impact on disease progression.
If you wish to be considered for inclusion in the natural history study of GAN, please email: LoriSames@Yahoo.com