Survey Examines Reproductive Choices in Families with SMA

Researchers at Indiana University are seeking parents of children with spinal muscular atrophy to take a survey about their subsequent reproductive decisions

Article Highlights:
  • Parents who have a child with a genetic disease such as spinal muscular atrophy may take multiple factors into consideration when deciding whether or not to have more children.
  • Genetic counselors and other medical professionals want to understand the factors parents consider when making these choices.
  • A study at Indiana University will probe these factors, through an anonymous, Web-based survey of parents who have had a child with SMA.
by Margaret Wahl on November 8, 2010 - 10:58am

Parents of children with spinal muscular atrophy (SMA), a genetic disease of the nervous system that shows variable severity, make different decisions about whether or not to have more children.

Katelyn Hanson, a genetic counseling student at Indiana University School of Medicine, and Virginia Thurston, clinical associate professor of medical and molecular genetics at the same institution, are conducting a study to find out more about the factors that influence decisions made by parents of SMA-affected children.

About the study

The investigators have designed a Web-based survey of multiple-choice questions that can be answered anonymously at Survey of Reproductive Decision Making in Families with Spinal Muscular Atrophy.

They note that the purpose of the survey is to learn about family planning choices that parents make after having a child with SMA and to yield information that will be helpful to other families facing these same choices, as well as to medical professionals such as genetic counselors.

MDA is not affiliated with this survey.

To participate

Participants must be a biological parent of a child with SMA, and the investigators request participation from only one person per household. The survey will take approximately 10 minutes to complete and will be available on the Web until Jan. 15, 2011. No information that can identify individual participants is being collected.

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