SMA News Today is conducting a U.S.-based survey to better understand the characteristics, needs, and treatment experiences of the spinal muscular atrophy (SMA) community.

Adults — from patients to clinicians — ages 18 and older are invited to participate. The survey is intended to take no more than 20-25 minutes to complete. Participants are asked to answer up to 48 questions focused on demographics, disease symptoms, treatment plans, side effects, insurance status, and their interest in taking part in future clinical trials and focus groups.

For those who would like to participate, the survey is available through the link below.

SMA News Today launched the survey in collaboration with BioNews Insights, the research arm of BioNews Services, which publishes this website. Data collection began May 18 and is ongoing.

“We always aim to provide the most accurate and statistically powerful analysis in the name of improving the quality of life for patients in the SMA community,” Ty Dunkelberger, general manager of BioNews Insights, said in a statement to SMA News Today.

“While this high-level goal may seem unachievable, we are seeing how the insights we gather may help doctors, pharma companies, and researchers make better decisions for patients who deserve the best care possible,” Dunkelberger added.

According to the survey’s site, by participating in this initiative, members of the SMA community have the opportunity to shape the “collective understanding of life with spinal muscular atrophy. The goal is to gain an overarching perspective of the many facets of the SMA community.” Therefore, the team at SMA News Today invites everyone to participate, including patients, caregivers, family members, researchers, and healthcare professionals.

All data gathered in the survey will be processed legally and ethically, in keeping with data protection rules. The research team uses the Qualtrics system, which ensures high-quality data protection capabilities that meet national and international standards for data security, including those established by the Health Insurance Portability and Accountability Act (HIPAA).

Survey results will be analyzed and shared on the SMA News Today website.

“Every response from the SMA community is valued and helps us build a clearer picture about the patient community as a whole so that action can be made to benefit SMA patients,” Dunkelberger said.

Currently, it is estimated that SMA affects 1 in every 8,000 to 10,000 people worldwide.

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