Survey on SMA Families’ Experiences Now Enrolling Participants

Ana de Barros, PhD avatar

by Ana de Barros, PhD |

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SMA challengesThe global consultancy company Communispace is conducting a market research project with care providers and family members of patients who suffer from spinal muscular atrophy (SMA). Those interested in participating need to simply fill out an online survey on the demands of taking care of a loved one with the disabling and chronic disease for which there is currently no cure.

The market research study is being conducted in collaboration with an undisclosed pharmaceutical company, which is sponsoring the project. According to Communispace, the short survey, which is focused on each care giver experience, obstacles and unmet needs, is going to help in the development of further programs, services, and other offerings from the pharmaceutical company, as well as hep understand the real difficulties of the families who live with the burden of SMA.

The survey, which is available here, aims to empower the voice of families with SMA, while increasing knowledge about their everyday requirements. The non-profit organization Cure SMA is also supporting the project, as they are inviting and encouraging everyone to participate while stating they believe it can help develop better resources.

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As a genetic disorder, SMA is developed due to a lack of certain nerve cells in the spinal cord and brainstem, the motor neurons. The disease affects normal muscle movement, causing weakness and waste of muscle tissue and consequently making it difficult to accomplish tasks such as walking, sitting, controlling movements, or even breathing or swallowing in severe cases.

Researchers all over the world are working towards a cure for SMA and their achievements have increased both the life expectancy and quality of patients. There are also several ways in which patients and their families can participate in the process, such as this one. In addition, Cure SMA has also recently advocated the benefits of human tissue donations made from decreased SMA patients, praising the families who donate tissue from their relatives.