It is important to know the impact of an illness on the lives of people it affects. Patient surveys are an important way to better understand from patients themselves what matters the most. This powerful approach is even more important when it comes to population sampling in rare diseases when patients are located across different cities, states, and countries.

Multiple system atrophy (MSA) is a rare ultra-aggressive form of Parkinsonism that has no cure. The Center is part of the Autonomic Disorders Consortium – funded by the National Institutes of Health (NIH) to focus on rare diseases, like MSA. When researchers at the NYU Dysautonomia Center joined forces with MSA Coalition – the largest patient advocacy group for MSA – they knew that they needed an MSA patient survey to know about the impact of MSA on a patient’s health.

They drew up a short list of questions that honed…

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