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 in the key features of MSA and what people have done to manage their symptoms. The survey went live to MSA patients that are part of the Contact Registry (click here to register). With the help of the NIH, in just a few short weeks, it received over 300 responses.
“The collective patient voice becomes more clear the more people we can get to participate,” explained Dr. Lucy Kaufmann – Principal Investigator. Chronic neurological conditions like MSA often have a great impact on individuals because of their relentless progression. It’s important to capture this. “You can trawl through a patient’s medical records for hours, but the information relates only to symptoms or complications for which that patient sought medical attention for.” In other words, there is a lot of information missing like when a symptom started, how quickly it deteriorated, and how the patient feels about it, which you can’t necessarily just pull from the clinical chart.
This is why we are calling on all MSA patients to participate in the MSA patient survey. We encourage you to lend your voice and share the link with other members of the MSA Community.
The results of the MSA survey will be tabulated, analyzed and shared. We hope to be able to complement our understanding of the evolution of the physical symptoms with other dimensions; like how this affects peoples lives? How they handle the complications of MSA? What type of care are patients with MSA receiving in cities, suburbs or rural communities?
By collecting this precise data focused on the symptoms of MSA we hope we can advances our understanding of what is important to families living with this disease and translate this into better care for the entire MSA population.
How to participate?
- Register for the Contact Registry: https://contactregistry.rarediseasesnetwork.org/Registration/Registration/RegStart/3573
- After registering, check your email for a personalized link to the online MSA Survey
- Complete the survey (this should take around 15 minutes)
Check your email inbox for a link to participate in the survey.