There are only limited treatments currently available for Motor Neurone Disease, each with modest benefits. The New Zealand Motor Neurone Disease Registry was established in 2017 to facilitate participation in research and clinical trials, and to aid researchers in planning and recruitment. The NZ MND Registry collects demographic, contact and clinical data for those who choose to enroll. 12th July 2018, there were 142 participants enrolled in the NZ MND Registry. 85.5% of participants are diagnosed with sporadic MND and 6.1% with familial MND. The registry has facilitated entry of patients into three studies to date. The role of patient registries is an ever changing one, but with clear utility at every point of along the pathway to drug discovery. The whole article you can check here.
Usher syndrome in Louisiana