Community Update Survey Q&A

Cure SMA recently launched the third annual Community Update Survey to address important issues in SMA treatment and care. The Community Survey covers several areas that are relevant to the real-world experiences of people living with spinal muscular atrophy (SMA).

Lisa Belter is the Senior Research Data Analyst at Cure SMA. Every year, she and the rest of the Cure SMA research team conduct the Community Update Survey to gain insight on the quality of life of people in the SMA community.

As new therapies are developed and the experience of SMA continues to change, it is more important than ever that we keep the voice of our community front and center. In this Q & A, Lisa shares more about the history and importance of this annual survey.

What is the Community Update Survey?

The Community Update Survey is an annual survey that we launch every spring to every family in our Cure SMA community. The information from the survey is used to inform healthcare providers, regulators, and payers on what families affected by SMA experience. It is also used to inform researchers on how SMA is changing as new therapies become available .

How long has Cure SMA been doing the survey? Why did Cure SMA start doing the survey?

We launched our first Community Update Survey in February 2017. The original purpose of creating and launching such a survey was, as the name implies, to get updated information from our Cure SMA community on what it is like to live with SMA.

Why does the SMA community have an annual survey? Why is it important?

An annual survey allows us to track changes over time. For example, one of the questions in the survey asks, “What is your current motor function?” By completing a survey every year, we can track the rate of change (if there is a change) in an individual’s motor function. This information, in turn, is used to determine where there is an opportunity to develop a therapy that will slow down the loss of motor function or improve existing motor function.

What does the survey entail?

The survey is an online survey that asks questions of or on behalf of the affected individual. The survey begins with common demographic questions. Then the survey moves into more SMA specific questions such as SMA type, SMN2 copy number, history of scoliosis surgery (if applicable), respiratory support, motor function, hospitalizations and treatments. The survey ends with validated patient reported outcome (PRO) instruments that assess quality of life, fatigue, and productivity loss.

Who can participate in the survey?

Every adult with SMA and every parent (or primary caregiver) of a child with SMA is invited to complete a survey. The survey is open to every family and adult in the United States and internationally as well. Individuals with SMA who are new to the Cure SMA community are also invited to participate in the survey.

The individual completing the survey must have reached the age of majority. The age of majority is 19 in Alabama and Nebraska, 21 in Puerto Rico, and 18 in all other states.

Caregivers who cared for an individual who has since passed away can also participate.

What does Cure SMA learn from the survey?

From the survey, we learn about demographics, healthcare experiences (from hospitalizations to surgeries), respiratory care, treatment use, clinical trial participation, and quality of life among those affected with SMA and their caregivers too.

What specific things has Cure SMA learned in the past from the survey?

The results from the 2017 and 2018 survey have taught us that patient reported health information is reliable when comparing results (such as SMN2 copy by SMA type) to clinical data. We have also learned that among those with SMA type 1, survival increases with clinical trial participation and bipap use. We have also learned that families affected with SMA incur high out of pocket annual expenses (about $5,000-$10,000), and almost all individuals experience a delay in diagnosing SMA.

How has Cure SMA used that information to improve quality of life for those affected by SMA?

We know how important it is that patient and family experiences be factored into clinical trials and FDA approvals. With data that proves the reliability of this patient reported health information, we have been better able to advocate for that. We have expanded our equipment pool to address one major cause of high out-of-pocket expenses for SMA families. And we have launched the SMArt Moves campaign, a national awareness campaign aimed at shortening the time that it takes for a family to receive an SMA diagnosis.

How long is the survey?

The surveys differ slightly depending on the age of the affected individual, but everyone should expect the survey to take about 15 minutes.

What can I receive as a thank you for completing the survey?

As a thank you for your time in completing this survey, everyone who participates will be entered into a drawing for a trip to the 2019 Annual SMA Conference in Disneyland, as well as other thank you gifts. We will be giving away the following:

  • Twelve hotel and registration packages for the 2019 Annual SMA Conference. These packages include registration for two adults and two children, and three nights at the Disneyland Hotel
  • Ten Amazon Echo Plus
  • Five Apple iPads
  • Ten $100 Gift Cards

Our thanks to the Industry Collaboration (IC) for their support and funding of the SMA community survey. The members of the SMA Industry Collaboration are Astellas, AveXis, Inc. a Novartis company, Biogen, Genentech/Roche Pharmaceuticals, Scholar Rock and Cytokinetics Inc.

Who do I reach out to with questions about the Community Survey?

Please reach out to [email protected] with any questions on the survey.

Where can I take the survey?

You can take the survey on our website. Please click here to begin the survey.

What is the deadline for completing the survey?

The survey will close on Tuesday, April 30th.

Take the survey 

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