The Autonomic Disorders Consortium is a joint project supported by the NIH and MSA Coalition that brings together clinical teams around the world to focus on MSA and other rare autonomic diseases
The National Institutes of Health (NIH) began an initiative to create collaborative consortia to bring together investigators working on rare (orphan) diseases. In 2009 five academic medical centers in the United States joined to create the Autonomic Disorders Consortium (ADC). NYU’s Dysautonomia Center is the site leading the natural historystudy. The project documents the clinical features of patients with rare autonomic diseases overtime. Amidst increasing competition, NIH has renewed funding for the Consortium. The grant award to was for four years.
Why study the natural history of a disease?
Large and well thought out natural history studies provide the groundwork necessary for planning clinical trials to test new treatments. They help us decide what endpoints to measure in a trial and how they should be measured. They provide the means to understand how much patients vary from one another and allow us to reliably estimate the number of patients needed for a…
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