SMA: Participants Sought for Study About Recreational Activities

Investigators at Northwestern University in Chicago are seeking people with spinal muscular atrophy (SMA), ages 2 to 21, to participate in a study about preferences and involvement in recreational and leisure activities.  

By identifying inconsistencies between the activities people with SMA would like to do and the activities they actually do, investigators hope they can help rehabilitation specialists address barriers that limit participation, and assist children and their families in fostering abilities and creating opportunities for more participation.

The objectives of this study are to identify:

  • differences between the activities people with SMA would like to do and activities they actually do, taking into account SMA type, age and gender;
  • characteristics of the types of activities people with SMA engage in, such as who does the activities with them, where they do the activities and how much enjoyment they get from doing them; and
  • the potential effects of cost, environment and time constraints on preferences and participation in people with SMA.

Study details

The study is limited to people ages 2 through 21 who have a diagnosis of SMA. All questionnaires will be mailed to participants at home.

Participants ages 6 and older will complete two surveys: the Children’s Assessment of Participation and Enjoyment (CAPE) and Preferences for Activities of Children (PAC). Parents can complete the Assessment of Preschool Children’s Participation (APCP) survey for children ages 2 to 5 years old.

In addition, demographic information will be collected for all participants.

Surveys are estimated to take 45 minutes to one hour to complete. All data will be compiled and stored securely at the Department of Physical Therapy and Human Movement Sciences at Northwestern University in Chicago.

For more information, contact Julie Johnston at Northwestern University: or (765) 418-6025.

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