This team of neurologists, located at prestigious hospitals in the United States and Israel, is led by Florian Eichler, Director of the Center for Rare Neurological Disease at MGH. This Clinical Research Network shares a research protocol (IRB) whereby patients with MLIV can be studied at any one site and all data is shared at a central location, available to all researchers working on MLIV disease. The importance of these clinical studies cannot be overstated: without rigorous clinical studies of patients with MLIV disease, including MRI brain imaging, retinal scans, collection of cerebrospinal fluid, and other data, MLIV scientists could develop a perfect treatment for MLIV and the FDA would not approve it for use in patients.