Thank you for your interest in this research!

 The purpose of this research is to gain a better understanding of the experiences of individuals with Down Syndrome and their families with regard to the transition from pediatric primary care to adult primary care medicine.

 This research involves asking adolescents and young adults with Down Syndrome and their families to answer survey questions about their transition experiences.  By compiling the responses to the surveys, I hope to be able to identify several specific and practical ways in which primary care pediatricians and adult health providers can improve the transition process for their patients with Down Syndrome.

If you would like to participate in this research, please complete the surveys following this introduction.  There are two surveys, one is specifically for parents and the other is for adolescents and young adults with Down Syndrome.  If you think that your son or daughter would like to participate, and you feel that would be appropriate, please have them complete their survey after the parent survey has been completed.  If they request your assistance with the survey, please feel free to assist them.  Both surveys are completely anonymous and participation is voluntary.  You may exit the survey at any time.  If you return to the survey later, it will resume where you left off.

Ultimately, this research will greatly benefit those with Down Syndrome, their families, and their primary care physicians.  If pediatricians were more aware of the unique needs of their patients with Down Syndrome, they could better prepare them for the transition to adult care.  Similarly, with more information, adult health providers could better anticipate the needs of their new patients, making the transition smoother. 

            Thank you very much for your time and assistance with this research.  If you have any questions or concerns, please don’t hesitate to contact me at meganlohr@virginia.edu.

 Sincerely,

Megan Lohr
University of Virginia School of Medicine
Class of 2010

 Please click here to begin surveys.