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The University of Kansas is working in partnership with PCORnet and the National Institutes of Health to study the health and belief in onesself (your self-determination) helps individuals with Down Syndrome do the things they want to do.  Our goal with this research is to develop better services for people with Down Syndrome to manage their health.

To participate in this study, individuals need to receive an invitation from one of five participating healthcare systems (Allina, Children's Hospital of Philadelphia, University of Iowa, University of Kansas Medical Center).  They will be asked to complete surveys so we can learn more about the health, community experiences, and self-determination of people with Down Syndrome.

In these surveys, we really want to understand the perspective of the person with Down Syndrome, so we request that the person answer the survey questions.  However, it is ok if someone supports them to access the survey.

Here is important information about the study:

  • This project is studying how your health and your belief in yourself helps you do the things you want to do.
  • Your participation in this research project is completely voluntary.
  • Your participation will take 1 hour.
  • You will be asked to do the following procedures: complete surveys from DS-CONNECT (about your community participation) and Self-Determination Inventory (about how you set goals, advocate for yourself, and solve problems, and make things happen in your life).
  • You will be asked to share information from your Electronic Medical Record from your doctor or hospital.  We will only access data on diagnosis, procedures, condition, medications, vital signs, and provider.
  • Data from this study will be stored on secure servers maintained by the team at the University of Kansas and also deposited in an NIH-designated data repository.
  • There are few risks to participating in this study.
  • This research will help us learn more about how your health and your belief in yourself helps you do the things you want to do.
  • You do not need to participate if you do not want to.
  • You will receive a $40 gift card after you complete the surveys.

Thank you for your interest in the DS-DETERMINED study.  If you would like to get involved, please contact:

Hannah Rachford

Last modified: Jul 22, 2021